breastfeeding down syndrome

BREASTFEEDING SUPERSTARS: TAMMY AND OLIVER

Oliver and his mom, Tammy.

Oliver and his mom, Tammy.

Little Oliver may be the sweetest, happiest baby that you’ve ever seen! His smile is infectious, and his mom, Tammy, has a “just do it” attitude that she brings into motherhood.

Oliver was lucky: though many babies with Down syndrome experience difficulties getting the hang of breastfeeding, Oliver caught on right away. He latched within the first hour after birth and had a very strong suck, which helped Tammy’s supply come in quickly.

Breastfeeding Oliver was different than breastfeeding her older children, Tammy noticed, since Oliver was a very sleepy baby. His nursing sessions didn’t last long and he ate more frequently than Tammy expected. It was hard for him to put on weight during his first month, but once he became more alert, he started gaining weight. 

Tammy said the Down Syndrome Diagnosis Network, a series of supportive facebook groups comprised of moms of children with DS, was the best resource to help her nurse Oliver successfully. The other mothers in the group helped her understand that what she was experiencing was normal. Before talking to those moms online, no one told Tammy that Oliver might be sleepier than her other babies had been, or that the act of breastfeeding would tire him out.

Tammy had no idea people could be discouraging about breastfeeding babies with Down syndrome. As Oliver got older and Tammy started talking to other moms, she learned that some were told it would be too hard and not to bother breastfeeding. Tammy was “appalled” to hear that and wanted to share her story to make breastfeeding a baby with DS seem less intimidating.

Tammy knows she was blessed to have experienced relatively few challenges with breastfeeding Oliver, but she said even if had experience challenges, she would continue to breastfeed because of the strong bond it created.

Why does Tammy love breastfeeding Oliver? Well, for one thing, Oliver loves it and he still breastfeeds whenever he can! Oliver had a birth diagnosis of Down syndrome and through the shock of the diagnosis, breastfeeding him as she had her older children helped the two of them to bond and helped her believe that even with the diagnosis, Oliver was just like her other children. Tammy also chose to breastfeed because of the benefits Oliver’s immune system, giving him a better chance of not getting sick. She credits breastfeeding for getting them through his first winter with minimal illnesses.

Tammy’s advice to other moms is to find people to encourage you and not listen to the naysayers.

“If you want to nurse your baby with Down syndrome, then do it,” Tammy said. “You won’t regret it at all. It is possible and we as a community are always here to help you get to where you want to go.”

Read about our other breastfeeding superstars!

Aimee & Cate
Michele & Harper
Cristina & Mae
Beth & Rian
Shu & Lewis
Timna & Rory

BREASTFEEDING SUPERSTARS: JENNIFER AND EMILY

Emily and her mom, Jennifer.

Emily and her mom, Jennifer.

Beautiful Emily and her mom, Jennifer, are the definition of breastfeeding superstars. They fought every challenge they encountered and now have the sweetest, most loving relationship. Their story will put a smile on your face and is a testament to the strength of mothers. 

Emily was born at Memorial Hospital in Pawtucket, Rhode Island but was quickly transferred to the Neonatal Intensive Care Unit at Women and Infants in Providence, Rhode Island with pulmonary hypertension, a ventricular-septal defect, an atrial-septal defect, anemia, thrombocytopenia, and congenital hyperthyroidism. After she was born, she stayed in the NICU for 16 days. Because of her health challenges, Emily was lethargic at first and didn’t wake up to feed. She would get tired easily while breastfeeding and her low tone made it tricky for her to get a good latch. She just needed some support—literally and figuratively (lots of pillows were used to help prop her up)!

Jennifer worked every day with an occupational therapist and lactation consultant to help Emily establish a latch, because she believed nursing Emily was a huge gift to her daughter. She wanted to breastfeed Emily to help them bond, for the antibodies to boost Emily’s immunity, and for the speech therapy benefits, since breastfeeding improves tongue coordination and strengthens the jaw and tongue.  

Emily was first able to direct nurse at two months old. Jennifer found holding her in a “dancer hold” the most helpful in breastfeeding her. Jennifer help Emily in a clutch, supporting her head with one hand and using her other hand to support Emily’s chin and cheeks. After sticking with this hold for awhile, Jennifer was able to improvise and find something even more comfortable for both of them. She rolled a small towel and placed it under Emily’s chin, which helped to support her lower jaw.

Jennifer’s most helpful strategy was to breastfeed at the beginning of a feed, since Emily was most alert during that time. After she began to get tired, Jennifer switched to a bottle of pumped milk so Emily didn’t have to work as hard. Each feeding took an hour and a half between nursing, pumping, bottle feeding, and cleanup, but Jennifer said the reward of being able to breastfeed Emily made it all worth it!

Though Jennifer was committed to breastfeeding, some people were not encouraging of her goals. Two nurses told her it would be too difficult for her to breastfeed Emily and that Emily wouldn’t grow fast enough, which “fueled the mama bear” in Jennifer and made her even more committed to success. 

Finding support systems was critical to Jennifer and Emily’s breastfeeding journey. At one point, her supply seemed to drop, so she asked her family to help with her older children so she could focus on pumping and nursing Emily, which helped increase her supply. She also attended a local breastfeeding support group.

“The support has been amazing,” Jennifer said. “Don’t be afraid to ask for help.”

Breastfeeding superstars like Jennifer show that challenges can be overcome. “My biggest advice would be to go for it,” Jennifer said. “There could be bumps in the road but there is support out there and it can be done."

Aimee & Cate
Michele & Harper
Cristina & Mae
Beth & Rian
Shu & Lewis
Timna & Rory

BREASTFEEDING SUPERSTARS: Timna & Rory

nicole starr photography-42.jpg

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

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. 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. 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: 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

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. 

Donate