BREASTFEEDING SUPERSTARS: Timna & Rory

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When you see the photos of Rory and his mom, Timna, from our breastfeeding photo shoot you can’t help but notice how much fun they are both having. They clearly delight in their relationship with each other and the happiness is palpable. You would never imagine that these two had a very difficult start.

Rory was born right on time, a much-anticipated younger brother. His family was surprised to find out that the doctors believed that he might have Down syndrome (DS). Timna had decided against prenatal testing for personal reasons. She understood that DS was a possibility but she never thought it would happen to her. Thankfully Rory did not have any heart issues and did not need to be admitted to the Neonatal Intensive Care Unit (NICU). He was able to try to latch and nurse right after he was born. He had some early breastfeeding success but then he became sleepy and started having problems keeping his oxygen saturation and heart rate up. He was moved quickly from his mother’s bedside to the Special Care Unit (SCU). Timna, who had successfully breastfed her older son, found it very challenging to try to nurse Rory amidst the confines of the SCU. She was not able to try a side-lying position, which is often very helpful for children with Down syndrome. She also found trying to initiate a breastfeeding relationship while managing the oxygen, wires, and monitors that he was attached to very difficult.

                  Rory was in the SCU for 12 days. During that time Timna pumped and gave him expressed breast milk with a bottle, knowing that initiating and protecting her milk supply was the only path toward a successful breastfeeding relationship. She felt pressure for Rory to consume enough calories so that he would get bigger and stronger, which the doctors told her was the only way that he would manage to keep his oxygen saturation up and go home. All babies have a “car seat” test before they are cleared to leave the SCU. This is a test where the baby is placed in a car seat for approximately one hour while they are monitored. In order to pass this test their oxygen saturation above a certain percentage. Rory did not pass but his family took him home in a car bed, which he had to use every time he was in the car, for several weeks. 

When Timna and Rory got home they continued to have several breastfeeding challenges. Rory would have a difficult time latching and even if he did latch he would fall asleep while nursing or would be too tired to nurse after a few minutes. Ten minutes later he would be hungry again so Timna had to supplement with bottles of breast milk. At around four weeks old Rory seemed to start really hate to nurse. He would scream and cry every time she tried to put him to the breast, and he often refused to latch. She thinks that he realized that the bottle was easier and began to prefer it. She began giving him a few ounces of milk by bottle, to take away the edge of being so hungry, and then would nurse afterward when he was more able to focus. As with many babies with Down syndrome, Rory had a difficult time nursing and breathing and so, in the beginning especially, Timna had to be very careful with positioning him in such a way that it was easy for him to be able to do both.  They also used a breast shield to help make latching and staying latched, easier.

                  Timna pumped 5 or 6 times a day to provide enough breast milk for Rory. At first, she attempted to nurse him at every feeding session but eventually pumping, feeding, and nursing became too much and she would just give him a bottle of breast milk. Sometimes she would go a whole day without attempting to nurse Rory and she was becoming more and more discouraged that they were losing their opportunity to develop a nursing relationship. She had a lactation consultant come to the house, which she found extremely helpful and supportive. The lactation consultant was very encouraging but mentioned to Timna that perhaps the pumping, bottle feeding, breastfeeding routine was having an effect on her mental health. Timna knew that she could stop pumping, and sometimes wanted to, but describes feeling a determination to make it work, despite wanting to throw her pump out of a window! Her lactation consultant gave her several good tips, including not spending too much time trying to position and latch. She suggested that Timna try to approach breastfeeding Rory very casually, allowing him to initiate. This can be extremely difficult for mothers who are so invested in trying to make their breastfeeding relationship work but Timna reports that’s ultimately what happened with her and Rory. One day, when he was about three months old, “We were in bed, and I put him next to me and was very calm about it. He didn’t completely crawl over and do it on his own, but he just had his head there and he was the one who was initiating and turned his head to do it and it finally worked really well.” She let him nurse without the nipple shield and realized that his mouth had developed in such a way that he was strong enough to nurse without it. Within a few days, they had left not only the nipple shield but also the pumping and bottles completely behind!  

When you’ve established a breastfeeding relationship with your child, it’s easy to look back and think that it was inevitable but, for many, there are dark and depressing moments, where giving up seems like the only reasonable option. Timna says, “definitely a few weeks into being at home and trying to nurse Rory and exclusively pumping, things went from ok, to worse and worse. The nursing sessions got more and more challenging. I had plenty of moments where I thought we were never going to get there, and I‘m just going to have to exclusively pump indefinitely, and it’s exhausting. I had my days when I started to lose hope, and I didn’t think we were ever going to get there, and this was our reality.” She was worried about what she would do when she had to go back to work. She knew that she could not exclusively pump and work, it just was not manageable for her. To help keep her sanity she set a goal. If Rory was not able to breastfeeding by five months old, she would stop trying. She reports feeling surprised and relieved when he was finally able to nurse. “I didn’t know he had it in him,” she says. When asked what guidance she has for other mothers she suggests having a supportive lactation consultant come to their home and says, “I think I was under the impression there was some kind of window, for all babies. Like, if they haven’t figured out nursing between 6 or 8 weeks, they probably won’t ever figure it out, and I guess that’s not true. I wish someone had told me it was possible that he could learn to breastfeed much later. It might have taken some of the pressure off.”        

Even though Timna’s journey to breastfeeding Rory was extremely difficult for her and she often wanted to stop pumping she continued because she really wanted to have a breastfeeding relationship with Rory, as she had had with her older son. She talks about the hours she spent, frustratingly trying to get her little nursling to breastfeed properly. She admits that sometimes they both ended up in tears. But the joy and relief she felt when they finally nursed well together was such a blessing, it solidified their bond and brought them even closer together. Rory became such a huge fan of nursing, by 4 months old you would never have known he had struggled in the beginning. In retrospect, after having nursed Rory until he was 22 months old she says that all of the difficulties were worth it.

READ ABOUT OUR OTHER BREASTFEEDING SUPERSTARS
Aimee & Cate
Michele & Harper
Cristina & Mae
Beth & Rian
Shu & Lewis

LET’S TALK ABOUT PUMPING

Julia’s Way surveyed mothers of babies with Down Syndrome (DS) and discovered that almost 70% of these mothers have to pump at some point during their baby’s breastfeeding journey for reasons other than returning to work (for example: until baby is strong enough to nurse; while waiting for heart surgery; or while baby is recovering from surgery). Pumping can be tiring and it may be challenging to establish your breast milk supply if your baby cannot nurse directly, but it can be done! 

We’ve written this blog post with the input of professionals and moms who have “been there, done that” to help you have the most success. If your goal is to eventually get baby to breastfeed exclusively, you should know it is possible and that the moms who have contributed to this article have babies who breastfed successfully for a year and beyond. If you plan to exclusively pump for your baby we are cheering you on and we admire your dedication to your baby! Please remember, a lot of the tips below are “ideals.” This is what experts and best practice recommend. However, we all know that real life is often not ideal. We want you to be aware of what to do to have the best chance of being successful but we know plenty of moms who haven’t been able to follow these instructions perfectly and were able to provide milk to their babies anyway. The last thing we want to do is add more stress to what may already be a stressful time. 

ESTABLISHING YOUR SUPPLY WHEN YOUR BABY CAN’T NURSE

Establishing a breast milk supply if your baby is not able to suck for whatever reason can be a challenge but it CAN be done! If your baby is not able to latch right away, ideally you will need to start pumping within six hours. 

  • There is some debate about how long it takes to fully establish a breast milk supply but there is research that shows that milk levels at two weeks may be a good indicator of what future milk production will be. Pumping 8-10 times a day for those few weeks will help to ensure a full supply. Aim to pump every 2-3 hours around the clock, with some variation built in. For example, taking a 5-hour pumping break overnight to get some rest is beneficial for most moms. If you were not able to follow these guidelines perfectly at the start, take heart! It may be possible to increase your supply as late as 3-4 months postpartum by diligently pumping.
  • Research indicates that milk production is the highest in the morning and starts to fall throughout the day so it is very helpful to pump first thing in the morning if you are trying to build a “stash” of milk for your baby.
  • A hospital grade pump can help establish your supply in the first few weeks.
  • Looking at a picture, watching a video, or having a piece of clothing that smells like your baby while you pump can all encourage letdown.
  • Hand expression can be more effective at removing colostrum/milk in the first 24-48 hours. This Stanford video can help you learn how. Some women are more responsive to hand expression, in general,  so experiment to see what works for your body.

GETTING THE MOST OUT OF YOUR PUMPING SESSIONS

  • Relaxing music has been shown to have a positive effect on milk supply. You can read the study here and a good synopsis here. Consider listening to something soothing while you pump.
  •  To establish your supply, more frequent pumping is often more important than longer pumping sessions.
  • Massaging your breast for a few minutes before you start pumping can encourage letdown and increase output. This article has good tips on how to do this well.
  • It may seem counterintuitive (and may take longer) but research suggests that you may actually get more milk if you massage your breasts while pumping. This will sometimes mean you will need to pump one breast at a time. Read more.
  • Try the “milkshake”! Lean forward and let your breasts hang down and gently shake them back and forth. This is thought to stimulate the breasts and release the milk droplets from the walls of the milk ducts.
  • Stay hydrated and try to maintain a healthy diet (not always easy when you are eating out of a hospital cafeteria). Protein-dense foods are important for good milk supply.
  • It may be helpful to watch this video on maximizing your milk supply, from Stanford University.

MOM TIP I always tried to have a large glass of water or something else to drink within arm's reach when I sat down to pump. A straw helped me to drink more water more quickly.

  • As long as it does not cause you pain, consider turning up the vacuum pressure during the two-minute letdown cycle. This may help your milk start flowing. After the letdown cycle is over, you can turn down the pressure as needed.
  • Some moms find it helpful to cycle through the letdown phase twice during a pumping session. If you can elicit a second letdown, you can increase your output and supply. On most pumps, the initial letdown cycle lasts two minutes. Pump for 6-7 minutes after that and then push the button to go through the letdown cycle again and pump for another 6-7 minutes.
  • Check your flange size. Sometimes going up/down a size will stimulate the nerve systems behind your areola more efficiently, thereby allowing for a better and more productive letdown, which leads to more milk. This article can help you determine your flange size but it may also help to be assessed by a lactation consultant.
  • If you are having a difficult time with your milk output, try “power pumping” (pump for 20 minutes, rest for 10 minutes, and pump for 20 minutes. Repeat this cycle for an hour). This simulates “cluster feeding” and can help increase your output.

MOM TIP I was so hesitant to call a lactation consultant because I felt that pumping wasn’t really nursing. When my OB told me “pumping IS breastfeeding” I felt so empowered. Little did I know how much a lactation consultant could help me to increase my supply and maximize my pumping sessions. I was also concerned that any lactation consultant might be discouraging of my efforts because my daughter had Down syndrome. If you have this concern too, it might be helpful to ask your local DS community who they’ve used who has been supportive. 

SAVING YOUR SANITY

We know that pumping can be challenging and exhausting, especially for those with the demands of older children, work, and/or medically complex babies. We hope these tips can help you save you some time, and maybe even some sanity, too.

  • Consider purchasing two pumping kits to cut down on washing parts as frequently. Make sure to read the CDC's guidelines for keeping your pumping parts clean.
  • We know it’s not always possible, but if it is, try to make pumping time “me time.” Use that time to unwind: bring a book, a favorite TV show, catch up on social media, or, meditate to the rhythmic sound of the pump. 
  • Most instructions suggest pumping 20 minutes at a time but that’s not always necessary. As we’ve stated, more frequent pumping is often more important than longer pumping sessions. So, take note of how much milk you have pumped after 10 minutes and then how much you’ve pumped after 15 minutes. If it is not a significant amount, you may want to shorten your sessions and concentrate on hand expression for a few minutes after pumping.
  • Especially if your baby is very young (thus not yet into everything) it can be helpful to pump while you are feeding your baby from the bottle.
  • Store pumping parts in a ziplock bag or other sealed container in the refrigerator between pumping sessions so you don’t need to wash as frequently.

MOM TIP I had a pumping station set up upstairs and downstairs (and in the car!). I used to pack a little cooler to take upstairs overnight. It contained all of my pumping parts and bottles to store the milk in. That way I didn’t have to leave my bed to pump. I washed everything in the morning.  

  • If you have it in the budget, consider these items that may make pumping a little easier:
    • a hands-free pumping bra
    • freemie cups, which allow you to pump discretely anywhere, even while driving
    • an AC adapter to allow you to pump in the car (helpful when driving to work or doctors appointments, which you may be doing frequently in the first few weeks)
    • a second set of pumping parts, so you don’t have to wash so often
    • lanolin or nipple butter that is safe for baby to decrease chaffing, which can cause discomfort in the beginning. Breast pads that you can freeze or heat up in the microwave can be helpful, too. Cold helps if your breasts are painful from pumping at the beginning and heat can help if you have a clogged duct.

SOME GREAT THINGS ABOUT PUMPING

  • If you have to go out with your baby, pump right before you leave and just carry your milk with you. It’s good for 6-8 hours at room temperature. See the CDC website for full guidelines.
  • Many moms have such a good supply when pumping that they actually donate milk to other babies who may need it. It is extremely rewarding to know that your milk has not only benefited your baby but other babies as well.
  • If you pump and give your baby breast milk through a bottle it means that other family members can help you with feeding time.

MOM TIP If you can’t nurse your baby and have to pump, this is the perfect time to recruit your partner or family member to help. Two nights a week my husband would take the night shift. I would pump right before bed, deliver a fresh bottle of milk to the bedside, and head off for my uninterrupted five hours of sleep. He would feed our daughter my expressed breast milk while I slept. I was bummed that I couldn’t nurse my daughter for the first several weeks of her life but I was really happy to have that sleep!

 A NOTE ABOUT GALACTAGOGUES

A galactagogue is something that you eat or drink that is thought to increase your milk supply. Many cultures have special food or drink that is traditional for new mothers to consume immediately after birth and research is beginning to show that those traditional foods frequently have a positive impact on milk supply! Galactagogues can be very helpful in improving milk supply but it’s important to remember that they do not work on their own. They have to be coupled with increased demand for maximum effectiveness. They can help your body to make more milk. There are several different galactagogues available. Kelly Mom has a good article on the pros and cons of using herbs to help your milk supply. This is not an endorsement of any supplement or herb for this purpose and it is suggested that you consult your doctor or lactation consultant before using any herbal supplement, tea, etc., to increase your supply. It is important to note that different galactagogues respond to different hormones so if you do have a low milk supply it may take some experimentation to see what your body responds to.


MOM TIP I ate a ton of oatmeal, drank plenty of water, and recruited my sister to make me “lactation cookies.” They were DELICIOUS! I can’t say if I definitely noticed an increase in my supply but I seemed to notice a bump in supply when I had them around. Bonus: If you are lots of family around wanting to do something helpful, ask them to make lactation cookies! They'll be doing something useful and you'll get the benefit of a boost in milk supply!

We hope these tips will help you prepare in case you need to pump for your baby and will help you maximize your pumping sessions. Pumping is hard work! You should make it worth your efforts. Whether you need to pump for a week or a year or more, we are here to support and encourage you.

 

We are so thankful to Dana Paris Mahoney, BA, IBCLC, RLC of The Robin's Nest Lactation Services, Jill Rabin, M.S. CCC-SLP/L IBCLC and Sruthi Muralidharan of No BS about DS for their help on this piece. 

 

BREASTFEEDING SUPERSTARS: Shu and Lewis

Lewis, and his mom Shu, are our latest breastfeeding superstar! Photo credit to Nicole Starr Photography.

Lewis, and his mom Shu, are our latest breastfeeding superstar! Photo credit to Nicole Starr Photography.

You can’t look at a picture of our breastfeeding babies without noticing this guy’s adorable mohawk. Meet Lewis, affectionately called Lewi by his mom, Shu. This pair is our latest in our Breastfeeding Superstars and we think you’ll love their story!

Lewis was born with several heart issues including a ventricular-septal defect, an atrial-septal defect, and a vascular ring. In addition, he has chronic congestion, making it hard for him to breathe through his nose and thus maintain a sustained suck, which is required to successfully breastfeed. Shu had hoped to have an opportunity for skin-to-skin time directly after Lewi was born in order to bond and initiate breastfeeding. His doctors, though, understandably had other ideas due to his heart issues. Shu and Lewis were only given about five minutes before he was taken away to be examined by a host of specialists. The next time Shu saw her son was several hours later in the Neonatal Intensive Care Unit (NICU). He was having difficulty sustaining his blood sugar, which is a common problem in children with Down syndrome. For hours, or sometimes even days, after birth, babies with Down syndrome (DS) can be too tired to sustain any sort of sucking, whether at the breast or from a bottle. This sleepiness makes it difficult for them to stay awake so they can eat enough to keep their blood sugar in a healthy range. This is often managed by giving glucose (a type of sugar) through an IV. Glucose is necessary for energy to help a baby’s brain and body function. If a baby is too tired to eat, his glucose will go down, and if his glucose goes down he will be too tired to eat. This can be a very dangerous feedback loop for new babies but is easily detected and managed. IV glucose is usually a temporary measure until the baby can take in enough calories on his own. If baby is not able to take in enough calories orally within the first several hours the medical team will usually suggest placement of a nasogastric (NG) tube and this is what Lewis’ doctors recommended. This would allow Shu to provide breastmilk through a tube that would go in through Lewis’ nose directly to his stomach. They would also be able to wean him off the glucose IV. Shu and her husband were hesitant, as they had heard stories that an NG tube could make feeding issues worse and Shu was absolutely adamant that her ultimate goal was to breastfeed her son, Lewis, just as she had his older brother. Eventually, Shu and her husband trusted the doctor’s decisions and allowed them to place the NG tube. Thankfully, the NG tube ended up being a temporary but necessary part of Lewis’ feeding plan. Within a week this Superstar was taking in all of his calories at the breast!

Many babies with congenital heart defects are unable to breastfeed at some point before their heart repair due to worsening heart failure, which leads to weakness and fatigue. But not Lewis! Lewis was able to breastfeed right up until his surgery. He had a few days of recovery but was back to nursing as soon as the doctors cleared him. He and his mom never missed a beat. Shu understands how lucky they are that Lewis was strong enough to nurse directly.   

When asked what advice she has for new mothers attempting to breastfeed their babies with DS Shu says, “Seek out your community for support!” Shu and Lewis’ story is a tribute to this philosophy and demonstrates how important it is to have the support of those close to you to help with breastfeeding success. Shu’s husband took on the heavy lifting of caring for their older son, allowing her to focus fully on getting Lewis to the breast. She spent as much time as she could in the NICU, patiently working with the nurses and lactation consultants to get Lewis nursing exclusively. Friends also visited the pair in the hospital, bringing food and support and cheerleading her efforts. Shu was absolutely convinced that she could and would give Lewis the same benefits of her milk that her older son had. She says, “Having breastfed my older son, I experienced the wonders that breastmilk does for the immunity and general health. I read that breastfeeding strengthens the muscles around the mouth, which helps with speech development.” She wanted those benefits for Lewis. The lactation consultants in the NICU showed Shu how to use a nipple shield. When used correctly it makes it much easier for babies to latch. It is usually a short-term tool and most babies can be easily weaned from using the shield after a few weeks and this was the case for Lewis. It helped him while he developed the skills and strength needed to nurse.

When asked about resources that Shu found helpful she says, “Sadly, the literature provided by the lactation consultant was very outdated. It had grainy photos of babies who, for lack of a better description, looked impaired. Had I received the DS diagnosis at birth, those images would have made me terribly upset. This is part of why I wanted to participate in this project.” Her experience gets straight to the heart of why we at Julia’s Way are so dedicated to developing an up-to-date, comprehensive breastfeeding resource for mothers of babies with DS. In order to help her process the diagnosis, Shu sought out other families like hers on Instagram and other social media sites. She found searching #theluckyfew, #nothingdownaboutit or #downsyndrome to be helpful. You can find other inspirational stories, posted by Julia’s Way, under #nursingdownsyndrome and #nursingT21. Share your story and tag us to help inspire and encourage other moms. 

READ ABOUT OUR OTHER BREASTFEEDING SUPERSTARS
Aimee & Cate
Michele & Harper
Cristina & Mae
Beth & Rian

PREPARING TO BREASTFEED YOUR BABY WITH DOWN SYNDROME: A GUIDE TO TAKING YOUR BABY HOME

BY JILL RABIN

This is the last in a three-part series on preparing to breastfeed your baby with Down syndrome, written specifically for women with a prenatal diagnosis by Jill Rabin, an International Board Certified Lactation Consultant and Pediatric Speech Pathologist. Read the first part and the second part. 

Congratulations, it’s time to take your baby home. What an exciting time for your new family! If breastfeeding did not work out quite as planned in the hospital, you may need continued lactation support at home. Many International Board Certified Lactation Consultants (IBCLC) can make home visits to assist your baby in transferring to the breast. Your hospital’s lactation consultant or moms in your local Down syndrome (DS) community can often recommend someone experienced in working with babies with special feeding needs. 

If milk intake and weight gain were the primary concerns while your baby was in the hospital, you might be feeling nervous about breastfeeding, worrying that your child is not getting enough to eat. It may help to know that targets for milk intake before discharge from the hospital are often set deliberately higher than required so that the babies have a reserve if they don’t drink as much during the first few days at home. Frequent weight checks are sometimes recommended in the first few days and weeks after discharge to confirm that your baby is receiving enough milk to gain weight and thrive. There are a variety of reasons that babies with Down syndrome may need to be supplemented with a bottle (with fortified breast milk or formula depending on his or her needs) after breastfeeding. Weighted feedings, when a baby is weighed before and after a nursing session, can help you and your lactation consultant determine if this is necessary for your baby. Weighted feeds are also a great way to see the progress that your baby is making from week to week and can prevent you from over-supplementing. You can also do weighted breastfeeding at home, by buying or renting your own scale. In addition to the scale, there are many breastfeeding smartphone apps, which track your baby’s feedings, as well as the number of wet and dirty diapers. These records will reassure you and your baby’s medical team that your baby is indeed taking in enough breast milk. We understand that doing weighted feeds at home may seem overwhelming to you. If so, that’s okay! Tracking the number of wet and dirty diapers should be enough for most babies.

Use of feeding equipment, such as a nipple shield or a supplemental nursing system (SNS) may be recommended by your lactation consultant to help get your baby to the breast. A nipple shield is a circular piece of silicone that goes over your nipple and may make latching to the nipple and sustaining a sucking pattern easier. A SNS is a thin plastic tubing system. One end is taped to your breast and the other is attached to a bottle of your pumped milk. The SNS allows your baby’s sucking efforts, which may initially be weak or ineffective, to be rewarded with milk. The SNS also helps your baby establish appropriate suckling motions and encourages bonding. It has the added benefit of forming an association between being at the breast and having a full belly. Use of both the nipple shield and the SNS is often short term but can be vital in making the transition to breastfeeding exclusively. Even if your baby has a nasogastric tube or a G-tube in place, they can practice suckling at the breast. Skin-to-skin contact or “kangaroo” care, paired with suckling at the breast with or without the SNS may increase your milk supply and “set the stage” for breastfeeding until your baby becomes strong enough to start transferring milk effectively. “Babywearing” is an easy way to have skin-to-skin contact. Several types of carriers allow you to hold baby snugly against your bare skin while having your hands free. Babies usually love being carried close to their mother’s bodies and it can be a simple and easy way to soothe and snuggle your baby. Baby Wearing International is an excellent resource and they have meetings in several locations worldwide. They even have scholarships to encourage mothers of children with special needs to wear their babies. 

Babies with Down syndrome usually have low muscle tone and have to work harder to maintain their bodies in position to breastfeed. A good chair and a supportive pillow or a baby carrier to help position your baby will reduce the work your baby has to do to feed and will free up energy for oral motor muscles to engage in latching and suckling. Correct positioning helps the baby to latch onto the breast better and encourages optimal milk transfer. Many mothers find side-lying nursing to be a very helpful position for nursing their babies with DS. Also, if your child has torticollis or lip or tongue ties he or she might not be able to compensate as effectively for them as other children due to the low muscle tone. It is essential that any ties are reversed and torticollis resolved to allow your baby to breastfeed. This is where you, again, may have to advocate for your baby. Some medical professionals still believe that babies with DS cannot breastfeed and will not do a thorough assessment to verify that all reversible issues are discovered and corrected. If your baby is having a difficult time nursing and no one on your medical team mentions assessing your baby for these issues, please ask them to do so.

While working to transition your baby to the breast, you will have to pump to establish and maintain your milk supply. This issue will be addressed more fully in a future article but you can also find valuable information in our 2nd article in this series and in our brochure, Nursing Down Syndrome: A Short Guide to Breastfeeding Your Baby. It can be a challenge to establish your supply when your baby is not able to directly nurse or with a baby with a weak or ineffective suck. If needed, you can talk to your lactation consultant about dietary and natural ways to enhance milk production. It is important to remember that these methods do not work in isolation and still require frequent and consistent pumping with an electric breast pump. It may be useful to ask your local DS organization or medical program if there are moms in your area who would be willing to support you through this process. There are also many social media sites that can also provide support and encouragement, although it’s good to remember that every feeding case is different and these are often moms and not medical professionals giving advice.

You may require ongoing support from the lactation consultant and speech pathologist, but with time and patience most babies with Down syndrome can successfully transition to breastfeeding. In addition to working with these feeding specialists, it is important to work on “tummy time” with your baby. Often when mothers have feeding difficulties with their babies, they have less time to practice placing their babies in a prone position or on their tummy. However, frequent tummy time exposure is critical and will help improve their trunk and shoulder strength, which in turn, results in improved jaw and tongue function for feeding. Learn more at www.lovetummytime.com. You can even practice skin-to-skin contact and tummy time at the same time by lying on your back and having the baby on your belly or chest. Hold onto your baby securely and talk or sing to him or her. Often babies will lift their heads to see their mommy’s face, helping them develop head control, and making them stronger, as described above.

It is important to contact your local early intervention (EI) program as soon as you return home. Your pediatrician can make a referral if one wasn’t made while your baby was in the hospital. You should arrange a developmental assessment with an early intervention team as early as possible. This team should include, but is not limited to, a developmental therapist, speech pathologist, and physical therapist. Occupational therapists and dieticians may be needed as well. It is important to have these evaluations take place right away to assist your baby in developing to his or her full potential and to provide you with ideas for positioning, playing, and feeding. They will instruct you on how to do “tummy Time” with your baby as this will have a positive impact on your baby’s development and feeding skills, as previously mentioned.

Possible medical complications, such as heart and respiratory issues, prematurity, low tone, and excessive sleepiness, can make the initiation of breastfeeding difficult. It is possible that you may need to pump for an extended period of time until your baby can successfully transition to the breast or if, for some reason, your baby is not discharged from the hospital at the same time as you. Sometimes babies with DS are not fully able to breastfeed exclusively until they are three to four months of age. Maintaining your milk supply is the key to ensuring that transition to breastfeeding is possible when your baby is ready. This is often best done by pumping frequently with a hospital-grade breast pump. You may need to continue pumping eight to twelve times a day if you are exclusively pumping. Pumping after each nursing session is important if your baby is still not strong enough to fully empty your breasts. Your baby may initially have difficulty transferring sufficient milk from the breast due to fatigue, low tone, or weak sucking reflex. For these reasons, in addition to medical complications, babies with DS often require bottle feedings of expressed breast milk to receive the necessary daily calories, at least until they get strong enough to nurse efficiently. One thing that may reassure you is that babies with Down syndrome don’t appear to have as much difficulty transitioning to the breast after receiving bottle feedings as other children. There also doesn’t seem to be a “magic window” for children with Down syndrome to learn to breastfeed and most tend to “get it” within the first few months.

The key to breastfeeding your baby with Down syndrome is being prepared and understanding the obstacles that you may encounter. You may need to strongly advocate for your baby as there are still health care professionals who are unaware that most babies with DS can successfully breastfeed. Surrounding yourself with knowledgeable health care professionals and a strong support network will generate positive results for you and your baby. Breastfeeding is not only possible for your baby with Down syndrome but is an important and therapeutic starting point for them. With the countless benefits of breast milk for your baby, in addition to the oral structural changes that can result from the act of breastfeeding, you are getting your baby off to a great start. While it may take them a little longer to transition to exclusive breastfeeding, and possibly require a little more intervention from professionals, it is definitely an attainable goal!

Read the rest of the series!

BREASTFEEDING SUPERSTARS: BETH AND RIAN

Photo courtesy of Nicole Starr. 

Photo courtesy of Nicole Starr. 

This is the fourth in a series of eleven breastfeeding superstars that we will feature in the coming weeks. Links to the others are at the end of this article. 

Welcome Beth and Rian to our latest edition of Breastfeeding Superstars! At five months old, Rian was the youngest participant of our photo shoot, which took place in June. Even at that young age, he had overcome a pile of medical challenges, including congestive heart failure at two months and open-heart surgery to repair a complete atrioventricular canal (CAVC) defect at three months old. Despite his challenges, he and his mother worked together to build a successful breastfeeding relationship.

Beth has two older boys who she breastfed successfully. Armed with previous experience and knowledge, she was confident she would be able to breastfeed Rian as well. With support from a lactation consultant at UMass Memorial Hospital, Rian was able to latch on to the breast and start nursing right from the start. The two were discharged home from the hospital when he was four days old and they continued to have a successful breastfeeding relationship for several weeks.

However, at five weeks old, Rian’s doctors determined that he was not gaining weight at the rate he needed for his upcoming heart surgery. Beth began to exclusively pump at that point in order to give Rian fortified breast milk by bottle, a common way to provide extra calories, in the hopes that he would be big and strong enough to come through heart surgery optimally. Beth attempted to keep their nursing relationship alive by putting him to the breast after each of his bottle feeds but Rian fairly quickly went into heart failure and was unable to stay awake even though his bottle feeding. Nursing became a rarity, much to Beth’s disappointment. She was committed to pumping and feeding Rian fortified breast milk with the hope that they could continue a normal nursing relationship after Rian’s heart surgery.

At three months old, Rian had heart surgery to repair his CAVC defect repair. An AV canal defect is a large hole in center of the heart, affecting all four chambers and making it impossible for the heart to pump efficiently. When the heart functions normally, it pumps oxygen-rich blood from the lungs to the rest of the body and oxygen-poor blood from the body to the lungs in order to “refuel”. However, a CAVC defect allows the oxygen-poor and oxygen-rich blood to mix so the body never becomes fully oxygenated. It also allows a larger volume of blood into the right side of the heart, placing pressure on both the heart and the lungs. Untreated, this disease can lead to both heart failure and lung failure. In general this heart repair needs to happen within the first six months of the baby’s life in order to prevent permanent damage and to save the baby’s life. Ideally, the baby will grow well and the heart will be a good size for surgery. However, this is difficult due to the combination of heart failure making the baby quite sleepy with poor endurance and the heart and lungs taking up excessive amounts of energy and calories attempting to keep up with increased blood supply. 

As you may begin to understand, it was critical to Beth to help Rian gain as much weight as possible as quickly as possible before his heart surgery. However, he was struggling to breathe and even drinking a few ounces of milk was a challenged. Beth recalls felling extreme anxiety and stress during this time. Rian’s feeding and breathing issues were getting worse every day and she was concerned that he would require surgery before he was physically strong enough. A few of days before his scheduled surgery, Rian completely refused his bottles and, out of desperation, Beth attempted to nurse him. It worked and Rian picked up where he had left off like he had never stopped nursing. Beth’s relief was palpable. She had been craving the closeness and bond of nursing with her sweet boy before handing him over for open-heart surgery, and she was grateful that she got her wish.

Beth continued to pump throughout Rian’s recovery so that he would have her milk to drink as soon as he was well enough. He did so well with pumped milk that doctors gave Beth the all-clear to begin nursing him. Much to Beth’s relief, he did an amazing job. Now, three months later, Beth and Rian are still nursing and have never looked back. “Every time I nurse Rian I get to look into his eyes and he’ll look back, sometimes giving me a big smile. I love the way he wraps his little fingers around my thumb and holds on, creating memories for me that will last a lifetime."

READ ABOUT OUR OTHER BREASTFEEDING SUPERSTARS:
Aimee & Cate
Michele & Harper
Cristina & Mae

PREPARING TO BREASTFEED YOUR BABY WITH DOWN SYNDROME: A GUIDE FOR THE FIRST FEW HOURS

BY JILL RABIN

This is the second in a three part series on preparing to breastfeed your baby with Down syndrome, written specifically for women with a prenatal diagnosis by Jill Rabin, an International Board Certified Lactation Consultant and Pediatric Speech Pathologist. Read the first part here

How do I manage breastfeeding once my baby is born?

Congratulations! The moment you’ve been waiting for is finally here and you’ve had your baby! If you’ve had a prenatal diagnosis of Down syndrome you’ve likely done all of the research you could think of. You may be a bit nervous about your baby and if he or she will be healthy or will need extra special attention. Maybe you wonder if he or she will need to be in the neonatal intensive care unit (NICU). If you want to breastfeed you are probably wondering if you will be able to try to latch your new baby right away. Well, much of what will transpire in the next 24 hours will be contingent on your baby’s medical condition when they are born. It is now time to use the knowledge you have acquired prenatally to determine what needs to be done to facilitate a successful transition to breastfeeding. One of the most important things that you can do to ensure the best possible chance of breastfeeding for your baby is to communicate your intentions to your medical team. This way you can build support and encouragement right from the start.

We think it is important to note that there is an “ideal” way to initiate breastfeeding and there is the “real” way. For babies with Down syndrome we often have to go with the flow and work within the framework of what we have. Sometimes our babies are medically complex or sometimes mom or baby have other challenges that need to be managed right away and breastfeeding takes a backseat. That is why it is so important to have a plan from the start so that your intentions don't get lost. Just remember, as long as you are pumping to establish and maintain your supply you have the basis for a breastfeeding relationship. Now, let’s get down to details!

Once your baby is born, if possible, you want to latch him or her onto the breast right away.  This allows for early imprinting which makes each successive feeding attempt easier. If possible, request that the hospital staff delay giving your baby a bath as there is new research out that suggests delaying infant’s first bath for first 8-24 hours improves maternal-infant bonding and encourages breastfeeding. If for any reason, your baby can’t get to the breast after birth, you need to start pumping as soon as possible, ideally within six hours, to establish a milk supply. This is absolutely key to protecting the possibility of a successful breastfeeding relationship in the future. Your baby may or may not be able to suckle directly right away. Some babies are not able to even attempt to breastfeed for hours or days. As long as you protect your supply by pumping you have the possibility of transitioning baby to the breast. Sometimes hand expression of colostrum, which this video demonstrates well, can be more effective than pumping in the first 24 to 48 hours. You can have the hospital’s International Board Certified Lactation Consultants (IBCLC) assist you. If your baby is unable to latch right away for any reason, request help immediately from a hospital lactation consultant so she can assess the situation early on and better help you to get your baby to the breast.  Early identification and intervention of issues can make a huge difference in establishing breastfeeding.  For babies with Down syndrome, there may be pressing medical concerns that prevent skin-to-skin contact but many moms are so overwhelmed right after birth that they don’t even ask. It never hurts to put in a respectful request to have even a moment or two of skin-to-skin contact with your baby, which will help promote bonding. This should be possible for many babies, even with the diagnosis of Down syndrome.

The lactation consultant may utilize a variety of different devices that can help to facilitate breastfeeding. One of these devices is a nipple shield. This is a flexible silicone shield that goes directly over the mom’s nipple. It can help babies with low muscle tone to better latch on to the breast and sustain a sucking pattern. It is often only needed for a short period of time and the baby can eventually be weaned from using it. Your lactation consultant may also suggest trying a supplemental nursing system (SNS), which is a thin plastic tubing system. One end is taped to your breast and the other is attached to a bottle of your pumped milk. The SNS allows your baby's sucking efforts, which may initially be weak or ineffective, to be rewarded with mom's milk. It has the added benefit of forming an association between being at the breast and having a full belly. It also helps your baby establish the appropriate suckling motions and encourages bonding. Use of this equipment is often short term but can be vital in making the transition to exclusive breastfeeding. 

It is often important for medical professionals to closely monitor your baby’s intake and output. This may seem incompatible with breastfeeding and some moms agree to bottle-feeding to satisfy the desire to ensure baby is getting enough so he or she can be cleared to go home. However, that is not the only option! You can request weighted feeds, where you weigh your baby with a digital scale before and after a breastfeeding session to estimate how many ounces he or she has consumed. Even if, for some reason, your baby is required to take nutrition from a bottle (or an NG tube) it does not mean that you will never have a successful breastfeeding relationship. You can still attempt to breastfeed while your baby is receiving nutrition from an NG tube, allowing for practice of appropriate suckling and to associate the breast with a full belly. It is important to advocate for your baby and your breastfeeding relationship but sometimes medical concerns take precedence. It may provide comfort to know that babies with Down syndrome sometimes hit bumps in the road to breastfeeding and many go on to overcome them. 

In addition to the lactation consultant, if your baby has initial issues with feeding while in the hospital, a speech pathologist may get involved to help with the transition to oral feedings. The addition of a speech pathologist can be vital to ensuring that your baby is successful with oral feedings. However, while there are many speech pathologists who are experts in feeding and swallowing, they do not always have a lot of knowledge or experience with assisting breastfeeding babies. Therefore, it is essential that the lactation consultant and speech pathologist collaborate using a team approach to get your baby to the breast.  

More on transitioning to home in the third installment of this series but it is important to work closely with the hospital IBCLCs to develop a feeding plan that includes weight checks to determine milk transfer and if the use of breastfeeding equipment like a nipple shield is required. Also, request a recommendation from the IBCLC for a referral to a professional that can follow you at home if continued support and intervention is necessary. They can also assist you in locating where you can rent a digital scale for home use if your baby is not gaining weight adequately. 

Remember first and foremost that early assistance from a qualified professional can help guide you on this journey. Planning, professional support, and knowledge about how to manage breastfeeding obstacles will help make the transition to breastfeeding a reality. And, we are here to support and encourage you along the way! We would love to hear about your breastfeeding successes and struggles.

See our resources page for further information on where to get help.

Read the rest of the series!

THREE OF HEARTS

Meet Cate, Harper, and Mighty Mae our "Three of Hearts." These little girls were all born within three days of each other and were all at Boston Children's Hospital for open heart surgery at the same time! When they met for the first time at our photo shoot to encourage breastfeeding among mothers of babies with Down syndrome we were surprised to hear that they were in the same hospital at the same time having the same surgery but they never met each other. When their families told us what they'd endured and how relieved they were to celebrate their 1st birthdays a few days later, we knew we had to celebrate big! A triple cake smash, the set laden with hearts, was photographer Nicole Starr's idea. The girls are showing off their scars to let everyone know what a heart warrior looks like. 

As many as 50% of babies with Down syndrome are born with congenital heart defects. Not all of those defects will need to be repaired but a large percentage of them need surgical intervention and they are always harrowing for the parents. Unfortunately, not all babies who have this surgery make it to their first birthdays and for those that do, their parents breathe a huge sigh of relief and often plan a big party to celebrate! These girls were no different and we are happy to say they are healthy and thriving today!  

READ MORE ABOUT THEIR STORIES:
Aimee & Cate
Michele & Harper
Cristina & Mae

"THREE OF HEARTS" IN THE MEDIA:

Nursing Down Syndrome

"I had heard from my pediatrician that breastfeeding might not happen"
"A lot of doctors told me I couldn't do it"
"We're never going to get there"
"It was devastating to me"
These moms and babies faced health challenges, sometimes discouragement from the medical community, and their own self-doubt but they were able to eventually nurse their babies with Down syndrome successfully. Just in time for World Breastfeeding Week, August 1-7, these moms have come together with a powerful message: babies with Down syndrome CAN breastfeed. Listen to their moving stories and learn how they persevered through NICU stays, hospitalization, illnesses, surgeries, leukemia, heart failure, and more to breastfeed their babies.

From Ella Gray Cullen, our Executive Director, “...no one should ever be told that she shouldn’t even bother to breastfeed her baby just because of a diagnosis of Down syndrome and for those who want to attempt breastfeeding but just need support or encouragement, we are here for them.”

To learn more about our project visit www.juliasway.org/breastfeeding.

Thank you to the moms who participated in this project and to our many individual donors and The Daylily Connection for their generous support and to Spectra Baby USA-Breastfeeding Products and Lansinoh USA for their corporate sponsorship. Without them, this project would never have been possible. 

Lansinoh logo.

BREASTFEEDING SUPERSTARS: CRISTINA & MAE

Photo courtesy of Nicole Starr Photography

Photo courtesy of Nicole Starr Photography

The first thing you notice about this week’s breastfeeding Superstar is her thick auburn hair that calls to mind a movie star from the 40s. Meet Mighty Mae and her mom, Cristina. Mae’s easy smile lights up her face and makes everyone’s day a little brighter. You would never imagine what she has battled, and won, to get to where she is today.

Mae was born full term and was a hearty 9 pounds. She spent the first 5 weeks of her life in the neonatal intensive care unit at Saint Elizabeth’s Medical Center and then an additional 5 weeks at Boston Children’s Hospital. She was born with several congenital heart issues, including atrial and ventricle septal defects and a Patent Ductus Arteriosus. She had her VSD/ASD/PDA repair at six weeks old but the surgery was complicated by a complete heart block. A heart block is a condition where the electrical impulses that normally instruct a heart to beat are either partially or totally blocked and so the heart beats too slowly. This can be a life-threatening condition and required another surgery to implant a permanent pacemaker. The device is the same size for adults and babies so, due to limited space near a baby’s heart, the implement is actually in Mae’s belly. It’s a palpable and very concrete reminder of all she has been through. Mae also struggled with pulmonary hypertension, which is high blood pressure in the lungs and can lead to right-sided heart failure. At seven months she had a third heart surgery to repair her mitral and tricuspid valves.

After Mae’s initial 10-week hospitalization she was in and out of the hospital several more times and spent a total of 134 days as an inpatient in the first year of her life. Throughout it all Cristina provided Mae her milk, at first directly at the breast, then through a supplemental nursing system (SNS), and then fortified with formula through a nasogastric (NG) tube. Like many babies with Down syndrome, Mae latched and nursed well right away after birth, actually managing breastfeeding more easily than taking breast milk from a bottle, but she struggled to have enough energy to gain the weight that she needed prior to her first surgery. The NG tube allowed Mae to receive the nutrients she needed without expending the effort that would have been required to nurse or bottle feed.

After Mae’s first heart surgery, at six weeks, she struggled to re-learn how to breastfeed. Her mother worked with lactation consultants in the hospital and outside of the hospital to help Mae relearn the skills she needed to nurse successfully. Mae did better with nursing than with a bottle so Cristina persisted. She describes a particularly emotional weekend where Mae’s medical team approved a trial of breastfeeding only, to see how she would do. It was over Labor Day weekend and Cristina describes it as “an absolute labor of love”. She nursed Mae every 3 hours, around the clock for 3 days. She used something called a supplemental nursing system (SNS), which is essentially a flexible tube taped to your breast with the other end in a small bottle of milk. The idea is that the baby does not have to work as hard to get the milk and it creates a positive feedback loop that encourages them to keep going. Eventually, as they get stronger, they wean off of the SNS and they are just direct nursing. Cristina would pump before she nursed in order to induce let down and she would get rid of her foremilk, leaving the calorie-dense hindmilk for Mae. Unfortunately, after 3 days, she had to admit that Mae was not ready to get all of her calories from direct nursing as she was not able to sustain her weight. The medical team reinserted her NG tube. This was difficult for Cristina to admit but she knew that she had to do what was best for Mae and she believed that Mae would eventually be strong enough. Unlike Aimee and Cate, our previous breastfeeding superstars, Cristina does not have an ah-ha! moment when Mae was suddenly able to nurse. Her journey to nursing exclusively was more subtle. After Mae returned home from the hospital she was breastfeeding and then Cristina would supplement her efforts with fortified breast milk through her NG tube. Gradually, over time, Mae needed less and less supplementation until they were finally able to remove the NG tube and Mae could nurse exclusively.    

Cristina nursed her older daughter for a full year and was committed to doing no less than that for Mae. She had the help of several lactation consultants at Boston Children’s Hospital. She also went to a “mommy and me” breastfeeding support group that she had attended when she was breastfeeding her older daughter. This level of continuous support and encouragement helped her feel that she and Mae would eventually be successful. She thinks it is equally as important for any child to breastfeed and sights the bonding time and the antibodies Mae received through her milk as her two most motivating factors. She is proud to have overcome the hurdles that she and Mae faced to develop their breastfeeding relationship and believe that it was worth it for her to persist. Cristina encourages new moms to try breastfeeding their babies with Down syndrome. “It is possible!” she says, “It might require a bit of extra effort, but sometimes breastfeeding does for any child. Don’t give up; seek support if you need it. It is so worth it in the end.”

READ ABOUT OUR OTHER BREASTFEEDING SUPERSTARS:
Aimee & Cate
Michele & Harper
 

PREPARING TO BREASTFEED YOUR BABY WITH DOWN SYNDROME: A PRENATAL GUIDE

BY JILL RABIN

This is the first in a three part series on preparing to breastfeed your baby with Down syndrome, written specifically for women with a prenatal diagnosis by Jill Rabin, an International Board Certified Lactation Consultant and Pediatric Speech Pathologist. 

So you know in your pregnancy that the baby you’re carrying may have Down syndrome (DS). You had every intention of breastfeeding this baby, especially if you have other children that you have breastfed previously. You may be asking yourself, can this baby breastfeed as well? Will having a diagnosis of Down syndrome mean my baby won’t be able to breastfeed?

Like everything in life, being prepared is essential. This is true whether you are training for a marathon, traveling to another country, or having a baby. While there have been many positive changes in respect to medical professionals and their understanding of the capabilities of little ones with Down syndrome, there is still a lot of misinformation about whether they can successfully breastfeed. I am here to tell you that they absolutely can, and in some instances they will transition to the breast just like any other baby.

There may however, be little bumps in the road that can complicate breastfeeding or delay its onset and smooth transition. If your baby is born prematurely, or has a heart or other medical condition at birth, this can prolong his or her discharge from the hospital and interrupt the feeding process. Also, a combination of low muscle tone, poor endurance, weak suck, and excessive sleepiness, often associated with newborns with Down syndrome, can further impact the feeding process. Some babies with Down syndrome may initially require nasogastric tube feedings and even bottle feedings. However, over time, with the right guidance from a lactation consultant, most babies can transition to exclusive breastfeeding. Being informed on what you need to do and how to do it is essential in making breastfeeding work. Your advocacy for your baby will start right at his or her birth, and sometimes even before. Educating others about what babies with Down syndrome can do may be part of the process. Not only is breast milk the best and healthiest food option for your baby with Down syndrome, but the process of breastfeeding itself can result in oral structural changes in your baby that can positively impact their breathing, palatal development, and future speech capabilities.

How do I prepare to breastfeed my baby with Down syndrome?

To best prepare for breastfeeding your baby with Down syndrome, it is helpful you to take a breastfeeding class and understand how breastfeeding works. As the frequency of breastfeeding is different from formula feeding and you don’t have a bottle to look at as an indicator of how much your baby consumed, it’s essential to know how many feedings your baby needs in 24 hours and how to determine appropriate output. You also want to check prior to delivery if your insurance will cover the cost of a breast pump. If for any reason your baby needs to be separated from you after birth, or you need to express breast milk long-term, it is essential for you to have a hospital-grade electric breast pump. A hospital-grade electric pump is the strongest pump available and will ensure you can maintain your milk supply over an extended period of time. Establishing and maintaining your milk supply is key, until you can be assured that the baby is transferring milk adequately. You also might want to contact the hospital where you are delivering and speak to their lactation consultants prior to your delivery. Let them know you may require some extra assistance as your baby has Down syndrome. Just because your baby has this diagnosis does not necessarily mean that he or she will have feeding issues, but if breastfeeding is a priority then it is best to be prepared.

In addition to ensuring there are lactation services available at the hospital where you are delivering, you want to secure lactation follow-up for when you get home, for ongoing support and assistance, if required. When looking for a lactation consultant, you want to seek out someone who is an International Board Certified Lactation Consultant or IBCLC. Ask them if they have experience with working with babies with Down syndrome, as they have to understand how low muscle tone and possible accompanying medical issues can impact the feeding process. Experience with management of feeding a baby with Down syndrome is key. This may involve extended time, follow-up and use of various feeding equipment, such as a digital scale, nipple shield, and supplemental nursing system. While some babies with Down syndrome may have no difficulty with transitioning to the breast, others may require more assistance. It is not unusual for some babies with Down syndrome to take up to 3 or 4 months to transition to exclusive breastfeeding. It is important to remember that there does not seem to be a “window” that closes for babies with Down syndrome and many frequently get the hang of breastfeeding as they get older and stronger.

This is also a great time to establish a support network. There are many organizations that can assist new parents who are having a baby with Down syndrome, as well as social media sites where you can communicate with other families. Establishing that support network early on can assist you in finding local resources, where other families can advise you on doctors, therapists and lactation consultants they have used with their own children. Facebook groups such as Down Syndrome Diagnosis Network have pages for expectant moms and a page dedicated to breastfeeding/pumping for babies with DS. Julia’s Way, Breastfeeding Children with Down Syndrome and/or Special Needs, and Down Syndrome Babysteps, all have Facebook pages which allow for networking and support for breastfeeding. Remember that while these social media sites can provide great information and resources for you and your baby, you always want to contact a qualified professional, such as an IBCLC, if you encounter breastfeeding difficulties. Many moms on these sites are simply reporting their own personal experiences and every situation is different, so if you are having serious issues with feeding you always seek a professional opinion from an IBCLC.

The key to breastfeeding your baby with Down syndrome is being prepared and knowing about the obstacles you may encounter. We often need to strongly advocate for babies with Down syndrome as there are still health care professionals who are unaware of their ability to successfully breastfeed. Surrounding yourself with knowledgeable health care professionals and a strong support network will yield positive results for you and your baby. Breastfeeding is not only possible for your baby with Down syndrome but an essential and therapeutic starting point for them. While it may take them a little longer to transition to exclusive breastfeeding, and possibly require a little more intervention from professionals, it is almost always an attainable goal! Good luck and remember, you are not alone!

Read the rest of the series!

BREASTFEEDING SUPERSTARS: Michele & Harper

Michele & Harper Photo credit to Nicole Starr Photography. 

Michele & Harper

Photo credit to Nicole Starr Photography

This is the second in an ongoing series of breastfeeding superstars featured in our photo and video to promote breastfeeding among children with Down syndrome. 

The first thing you notice when meeting this week’s breastfeeding superstar is how delightfully expressive she is. Looking through the photos from our shoot you can tell exactly what she’s thinking and she had us all laughing with her transparency! Meet Harper, and her mom, Michele, the second in our breastfeeding superstars series.

Harper was born three weeks early with Down syndrome, a complete AV canal defect, and transient myeloproliferative disorder (TMD), which is a condition found only in newborns with Down syndrome. TMD is a form of leukemia that usually spontaneously resolves but requires treatment in about 20% of cases. It can be fatal if intervention is not successful. Harper has been monitored monthly since birth to ensure that her TMD has not transitioned into leukemia and we celebrate because last week we found out that she now only has to have her blood checked twice a year!

                  Harper, who turned one in June, is the middle child in our “three of hearts” series, and was in the hospital for the first 10 weeks of her life. Even though Harper had a latched well from day one she had difficulty sustaining her breastfeeding sessions because of her weak heart. The doctors were concerned that she was not getting enough volume and calories so they suggested she switch to fortified breast milk. She was eventually diagnosed with failure to thrive because she was unable to gain the weight required to keep her healthy and even the act of suckling from a bottle was too taxing. Due to her lack of weight gain, her worsening heart failure, and her need to rapidly get strong enough for her heart repair surgery, Harper’s medical team placed a nasogastric (NG) feeding tube. Throughout her time in the hospital Michele continued to put Harper to the breast but also pumped milk that the nurses could feed to Harper through her NG tube.

Even though Michele’s obstetrician warned her that she should accept the fact that Harper she would need special feedings, bottles, and possibly tube feeds, Michele was determined to breastfeed her anyway. In one respect, Michele’s OB was correct, Harper did need all of those things in the beginning of her life but that’s not where the story ended. Due to Michele’s experience nursing her other children, the support of the nurses on the pediatric floor, and her dedication, Harper was eventually able to directly nurse at the breast and is a champion nurser a year later.

Michele relays the story of being told by her genetics counselor that her baby would likely never eat or drink like a “normal child”. Understandably, Michele cried for hours and left his office with a deep fear that she would not be able to nurse Harper. She struggled with her baby’s diagnoses of Down syndrome in the beginning and felt like a failure for not being able to have a healthy child. She was terribly afraid of losing Harper to her heart issues or to her TMD and she found it very difficult to bond with her baby at first. Thankfully, despite her worry and her negative early experiences with her medical professionals she remained committed to breastfeeding and found allies in Harper’s. They encouraged her by telling her that the babies with Down syndrome were often some of the best babies that they’d had in terms of breastfeeding. She says the nurses encouraged her and helped her feel as though providing her milk was critical to ensuring Harper the best start in life. As she nursed Harper she got into the familiar pattern of providing nourishment for her baby and started to bond with her like she did with her other children.

Michele and Harper left the hospital soon after her heart repair and Michele continued to pump and feed her through her feeding tube while bringing her to the breast to help her continue to develop those skills. Harper had her NG tube removed in mid-September and she has been strictly on oral feeds since then and nurses at the breast just like Michele’s other children did.

Michele admits that their road was a bit difficult and complicated but says that, for her, seeing Harper nurse successfully after trying for so long has given her the confidence that her baby can do anything she sets her mind to. She has this advice for moms who would like to breastfeed their babies but are afraid that they won’t be able to do it, “Do it! Get help if you need it, talk to other moms who have had positive experiences.”

 

READ ABOUT OUR OTHER BREASTFEEDING SUPERSTARS:
Aimee & Cate
Michele & Harper
Cristina & Mae

 

THREE OF HEARTS

Meet Catherine, Harper, and Mae, our "three of hearts". 

Meet Catherine, Harper, and Mae, our "three of hearts". 

We are so excited to share our "three of hearts" with you in a few weeks! These three heart warriors were all born within a day of each other, all have significant congenital heart defects, and have all gone on to be champion nursers. It gets better though, they all had their heart surgeries at the same hospital and they were all inpatient at the same time. They never knew of each other until Julia's Way brought them together for our spectacular photo shoot, that has gone on to inspire breastfeeding moms everywhere.

We have a cake smash scheduled for them in about ten days and we can't wait to see the photos. These girls are not only advocates for Down syndrome, not only for breastfeeding but they're advocates for congenital heart disease (CHD) as well. We are highlighting their journeys on our blog and through this photo shoot in order to bring awareness not only to CHD but to reinitiating breastfeeding after heart surgery. We are amazed by how much they've overcome in their short lives and we can't wait to celebrate them. Stay tuned for the photos.

Read their individual stories here:
Aimee & Catherine
Michele & Harper
Cristina & Mae

Breastfeeding superstars: Aimee & Catherine

Photo credit: Nicole Starr Photography

Special thanks to Sruthi Muralidharan from "No BS about DS" for co-authoring this profile. 

Catherine and her mom, Aimee, are superstars in the world of breastfeeding if you ask me. Catherine, who turned a year old in June, was born with Down syndrome, duodenal atresia, a blocked common bile duct and several heart complications including a complete AV canal defect with tetralogy of Fallot. She required multiple surgeries soon after birth to remedy these issues and spent the first eighty days of her life in the hospital.

Catherine’s first surgery, the repair of her duodenal atresia, happened when she was just four days old. Duodenal atresia is a malformation of the small bowel that makes it impossible for the stomach contents to pass into the rest of the GI tract. It is a relatively simple repair but the condition can be life-threatening if it is not done soon after birth. While Catherine was healing from her duodenal atresia repair she had to receive all feedings through a nasogastric (NG) tube (a small tube is threaded in one nostril, down to the stomach). She kept the NG tube in for more than 4 months.

From the time Catherine was born Aimee worked with the lactation consultants at Boston Children’s hospital to pump and develop her milk supply.  Catherine was given this milk, fortified with formula to increase the calories, through her NG tube, which allowed her to receive many of the benefits of breast milk, including the protective antibodies and the custom-designed nutrition while ensuring that she was receiving enough calories to thrive.

Catherine’s congenital heart disease required that her heart and lungs work overtime to meet the demands of her basic metabolic processes and so she didn’t have any reserve left over to nurse. Additionally, Catherine’s low tone, caused by her Down syndrome, meant she had a weak suck and put her at risk for aspiration. Despite all the health challenges, Aimee was determined to breastfeed Catherine. Aimee says, “From the moment I found out that Catherine would have Down syndrome my only thought was that we will be fine if she could breastfeed”. Having a newborn in such a medicalized environment and not being able to take her home and just enjoy her seemed incredibly abnormal to Aimee and she felt that being able to nurse would bring normalcy to their situation. She was lucky to have had the experience of nursing her older child and was committed to nursing Catherine, too. With the encouragement of lactation consultants at Boston Children’s Hospital Aimee began to pump to establish her milk supply. Meanwhile, they continued trying to get Catherine to latch properly, working with her frequently with the ultimate goal of having her directly nurse at the breast.  After her heart repair, Catherine gradually began to have longer periods of wakefulness and her suck became stronger and more coordinated.

At about four months old Catherine and Aimee were at home and Catherine pulled out her NG tube and Aimee thought this is it; we have to make this work. Aimee felt like Catherine needed to take this opportunity to figure out how to directly nurse at the breast because she knew she couldn’t keep pumping.  Children who have a history of an NG tube from birth sometimes have oral aversions and have a difficult time taking anything by mouth. However, Aimee put Catherine to breast and she nursed like she had been doing it for her whole life. “It was like all the stars aligned for her…and for me…I felt … we can really do this.”

Despite significant medical challenges, several surgeries, and weeks in the hospital Aimee and Catherine persevered. Aimee’s desire to have Catherine nurse at the breast was always in the forefront of her mind. Even though pumping can be difficult she feels that the reward was worth it. Now that Catherine is nursing directly at the breast the relationship is even sweeter since she knows how hard she and Catherine both worked to get to where they are now. When asked what advice Aimee would give mothers out there who want to breastfeed their babies with Down syndrome she says “I just want to tell you: don’t give up. You can do it and you can do it together.” 

Photo: Courtesy of Nicole Starr Photography.

READ ABOUT OUR OTHER BREASTFEEDING SUPERSTARS:
Michele & Harper
Cristina & Mae

IN PRAISE OF PUMPING

Everyone knows that I am a huge supporter of nursing. I've written about it here and here. What many people may not know is that I could never have had a successful nursing journey with Julia Grace if I had not been encouraged to pump within the first six hours after her birth. My daughter, like many babies with Down syndrome, was sleepy when she was first born. She had an excellent latch but a weak suck and an uncoordinated "suck-swallow-breathe" cycle, which is key to helping babies breastfeed successfully. As a result, she would easily tire herself out and was not getting enough calories to sustain weight gain. One of my dreams of having a child was to have a breastfeeding relationship. I wanted that experience for her, and for myself. I was very, very lucky to have a team of supportive medical professionals to encourage me because despite my deep desire to breastfeed and my background in maternal-child health everything was hard in the beginning. I was exclusively pumping and trying to establish my supply as a first-time mom so I pumped 10-12 times a day and I was *exhausted*. I was constantly worried about my supply and if she was getting enough and if I was doing the best thing for my baby. I wondered how long I could keep what essentially felt like a full-time job (I once calculated that I spent over 40 hours each week feeding my daughter, pumping, and cleaning all of the parts).

In many ways, I felt like an outsider in the breastfeeding community. Was I really breastfeeding my baby? I didn't feel like I belonged in a traditional lactation group; I worried about consulting an ILBC because I didn't want her to tell me it wasn't possible (that fear was unfounded, by the way, the ILBC's that I worked with were phenomenal); I felt alone and even though there are groups dedicated to supporting breastfeeding and pumping moms of babies with DS, I didn't really feel *connected* to any of them. I shouldn't have felt alone because our research shows that as many as 70% of moms of babies with Down syndrome have to pump at some point during their baby's journey, either to establish their supply while their child gets strong enough to direct nurse or while preparing for open-heart or other surgery. In our group of women, 90% had to pump at one time or another for reasons other than returning to work, etc. I think it's safe to say that we would not be where we are today with our successful breastfeeding relationships without our breast pumps, for better or worse. 

I'll leave you with the most important thing I heard during that time. I was speaking with my OB during my 6-week check up and I said "well, I'm not really breastfeeding, I'm pumping" and he did not even hesitate before he said, "That is absolutely breastfeeding." 

NURSING DOWN SYNDROME

A few months ago I mentioned to a friend that I wanted to do a nursing photo shoot with my daughter with Down syndrome (DS). I was disheartened by hearing from women who had been told that their babies likely wouldn't nurse. Some were told by their doctors or other medical professionals that they shouldn't even bother. My breastfeeding relationship with my daughter is one of the greatest treasures I have and I felt sad to hear women say they felt they couldn't have that just because their child had Down syndrome. Many, if not most, babies with DS can breastfeed and for those that can, and whose mothers would like to do it, the benefits are immeasurable. Feeding your child is always a personal choice, but some of these women didn't have a choice because of their medical professionals. Somehow, my vision of posting a photo of myself nursing my daughter on my personal Facebook page to create awareness spawned a non-profit dedicated to reimagining life with Down syndrome and suddenly we had 10 women who volunteered their time. These women nursed their babies and children despite challenges most people could never have imagined including months' long NICU stays, heart failure, open heart surgery, pulmonary hypertension, duodenal atresia, leukemia, prematurity, and hypothyroidism. These women came together to give a gift to new and expectant moms, something many of them feel that they didn't have enough of: encouragement from real moms, like themselves, who struggled through the early and difficult days and eventually met success, usually when they least expected it. We want to say you can do it! We are here cheering you on! and go, mama, go! 

I'm so proud to have gathered these strong and inspirational women together for this project. I know we have started to change the conversation around breastfeeding babies with Down syndrome. And, we've only just begun. We have a video and a book coming out over the next month. Help us reach more moms by contributing to our project. All donations are tax deductible. Special thanks to Nicole Starr Photography for these amazing images. 

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ON THE OCCASION OF YOUR 1ST BIRTHDAY

My sweet daughter,

So many months ago, before we knew that you had Down syndrome when we were told that there was something wrong, something that could be “inconsistent with life”, I wish I could have had a window into this moment. You’ve fallen into complete exhaustion, right here on my shoulder and I just let you lie, as I often do. I nestle my nose down deep into the crevice of your neck and I inhale and my body unfurls from the top of my head, south, all the way to my toes. I find refuge from the exhaustion of being a new parent in the understanding that we are two parts to a very intricate puzzle.

Despite my best intentions, I have to admit to myself, and to you, that I have not loved the baby years but, dear god, I have loved you, my baby, more ferociously than I could have thought possible. I cannot believe our luck, your father’s and mine, that we get to be your anchors. That in a room full of a dozen people, you seek us out as your center, your home, your safe space. I meditate daily on how to be worthy of your jubilance; on how to meet your absolute love of life with my own; on how to put away my to do list and my exhaustion and be present with you as you meet the world as a new and fascinating adventure every, single day.

We get to define no less than a thousand things for you in the course of your lifetime and, I realize today, that not one of them is more important or urgent than love. We get to help you hone what it means to love and be loved; to navigate how you will treat others and how you will allow yourself to be treated. I know this is probably a temporary job but until then I will do my best to make my words to you a meditation of kindness. I pray they graze your head with gratitude, that they knit themselves into your heart, making you strong and compassionate. I hope they urge you upward and outward, that they encourage you to keep grabbing at life with your tiny fists. My daughter, my love, the brightest star our sky, happy, happy birthday.

Love, 
Mommy

THE CHARTER SCHOOL DEBATE

Betsy DeVos, the Secretary of Education under the current administration, has been a huge proponent of "school choice" and voucher programs. Unfortunately for children with special needs, these programs frequently shunt money away from public schools to religious and private schools. While public schools are required to make accommodations to educate ALL children, including those with special needs who may take more resources to educate, private and religious schools have no such mandate. That means as voucher programs grow, public schools have increasingly fewer resources to educate children with high needs while voucher schools are able to "cherry pick" their students. This administration is attempting to gut public schools with the excuse that some schools are failing and that those children should have a right to chose what school they attend. However, what they should be doing is fully funding public schools with guidance and resources directed toward failing schools so they can better serve their communities.
     Charter and voucher programs are not the answer for our kids and everyone loses out if we continue this path toward privatization. The Network for Public Education has several interesting fact sheets that answer the questions: Do charter schools get better academic results? Do charter schools save money? Do they hurt public schools, etc? Read the full fact sheets at their website. The National Education Association has an opinion piece entitled School Vouchers’ Dismal Record of Failure Comes Into Focus, which discusses why these programs are bad for students. 

ACA Repeal Affects Families

There has been a lot of talk about repealing the Affordable Care Act (ACA) recently. There are several things that concern me about this with regard to how it will affect those living with Down syndrome (DS). The first is the pre-existing condition statute. The current law forbids health insurance companies from denying coverage to anyone, regardless of health history. It also forbids companies from charging higher premiums to enrollees just because they have a pre-existing condition. Even if your child has no other health issues, most insurance companies consider DS itself a pre-existing condition. Before the ACA was implemented people with DS and their families were essentially locked into an insurance company. They were hesitant to change insurance providers or to leave their jobs because of the fear that they would no longer qualify for insurance, or that if they did they would be charged prohibitive premiums. People also lived in constant fear that their employer would change insurance providers or that they would be laid off. People often stayed in jobs that were unfulfilling or declined better positions with more opportunities because they were afraid that they wouldn’t qualify for insurance with their new employer. This placed an undue and unfair burden on families who had children with DS.

The other concern I have about the repeal of the ACA is that we will lose the ban on lifetime limits. Before the ACA, insurance companies could set a dollar amount for how much they would pay to cover medical expenses for any given individual. Essentially, they could say, “sorry, you’ve reached your lifetime limit and we will no longer pay for your medical expenses”. These are the kinds of events that bankrupted families before we had healthcare reform. You can google this topic and read hundreds of stories about young children who exhausted their lifetime limits. The LA Times published a story in 2008 about a little girl who had what her parents thought was an ear infection. It turned out she had a virus that damaged her heart. She went over her lifetime limit within three weeks of the original diagnosis. She was 20 months old. There are hundreds of stories of children who met their lifetime limit before they even left the NICU. This meant that these children were cut loose from their insurance companies, who never had to spend another dollar treating them. Imagine that your child is in the NICU receiving life-saving treatment and your insurance company calls to tell you that you are fast approaching your lifetime limit. What are your options? You have to choose between allowing your fragile baby to get the care he or she needs and being bankrupted by medical bills. If you reach your lifetime limit you could seek coverage from other insurance companies but, of course, your child has a pre-existing condition so no one is required to provide coverage to your child and if they do provide coverage, they can charge astronomical rates. None of the plans set forth to replace the ACA have yet addressed the topic of lifetime limits but if the ACA is repealed those prohibitions will go with it. 

Before the ACA, which banned lifetime limits and discrimination for pre-existing conditions the anecdotal stories of families being forced to decide between treating their child’s cancer, heart condition, or other medical issue or to pay their mortgage or other bills were heartbreaking. If you know any families who have children with medically complex needs you know that they already have so many challenges. I have a good friend with a 10-month-old daughter who is absolutely the joy of her family. She has been inpatient for over 100 days of her young life. She’s had two heart surgeries, including one to implant a pacemaker. Her parents already have to juggle full-time jobs, managing their daughter’s complex medical issues, and visiting her in the hospital against meeting the needs of their older daughter and the demands of daily living. Thankfully, they live close to the hospital so they don’t have the added financial strain of paying for hotel rooms, which can add up to several hundred dollars a week, but they still pay out of pocket for parking, gas, and meals. Having your child in the ICU is bad enough and the additional financial resources required are numerous, but before the ACA they had to wonder “is this the hospitalization that will put us over the limit?” and if it does “how will we ever be able to afford another insurance?” At least with our current insurance plans, we take those two huge worries away from them so they can focus on helping get their daughter home, where she belongs.

For a society that purports to believe in family values and family first, a compassionate health insurance bill is the only option that could possibly align with those values. 

For more information about how the repeal of the ACA might affect those living with DS, check out this fact sheet from the NDSS.

Keep them first

    “Look at that cute downs baby”
            “I had a downs kid in my class in high school”
  “My friend has a downs child”

 
Nothing about the statements above seem particularly offensive to most people but if you really think about it, they all make the CONDITION primary and the PERSON secondary. People with disabilities are people first and they have many other features that make them who they are – brown hair, green eyes, a resemblance to their father, a wicked sense of humor, a great pitching arm. When we use language to put their condition first we discount all of those other things that make them unique. Even if their difference is their most obvious feature it doesn’t mean that’s all they want to be known for. My hair is almost always frizzy but I don’t really want to be known as “the frizzy-haired woman”. I would hope you would talk to me and find out I’m also the woman with a terrible sense of humor (based mostly on puns) or the one who always uses the wrong emoji when sending text messages.
            We would never in a million years say “that cancer kid” or “that diabetes guy”. We can identify that as inherently disrespectful and dehumanizing. It’s the same with any other condition. For example, Down syndrome is not the first thing you would ever see about my daughter, Julia Grace. Most people remark on her blue eyes or her ready smile or her silly noises. That’s what makes her Julia Grace, not her Down syndrome. So, the next time you want to refer to someone with a difference or disability make sure you ask yourself, am I putting the PERSON first? Or, better yet don’t even say “that baby with Down syndrome” at all. Instead say “that funny (silly, sweet, blue-eyed, cute…) baby, Julia Grace.”
             

A DIFFERENCE IN PERSPECTIVE

Julia Grace and I are taking a child development class at a local parenting center. Today was our second class and our teacher asked each of us what we were celebrating this week. The thing that reverberated with joy throughout my entire body was that we found out yesterday that Julia’s beloved friend who has one of my favorite mamas in the world had a negative bone marrow biopsy. When her mama told me the good news I held Julia Grace and we danced and cried and celebrated with them like she was our own family because this community of friends has become like a family to us.

This is what I find the most stark about being a mom of a child with special needs and about being so steeped in this community. I don’t know if any of the women in that classroom has been touched by tragedy or if they’ve seen their friends undergo horrific loss or illness, maybe they have. But for us it’s a sadly common occurrence. I can count six littles in our community that we’ve lost in the brief time I’ve been part of it. I’ve only counted one mama among our close friends but every loss hits us like a ton of bricks. We are a community, one big family, and we celebrate and mourn and hold each other up and cheer each other on at every turn. We hold our breaths with the parents of those going through medical challenges. We sigh with relief when we get good news. We offer support and encouragement when we get bad news.

This is such a weird change of perspective because I expected to feel isolated because Julia Grace is the oldest baby and she’s one of the only ones not crawling. Frankly, even as I type that it seems silly. She will get to those things in her own time. But, sitting there trying to think of something, anything else to say besides that I was singing with joy that a child doesn’t have cancer, made me feel a million miles from everyone else in that room. In our video, Why be Normal, I committed to showing Julia Grace how to be a badass and according to Brene Brown, “people who wade into discomfort and vulnerability and tell the truth about their stories are the real badasses.”  So next time, I will tell my truth and celebrate the joys of my community. Excuse me, the joys of my family.