nursing down syndrome

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 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!

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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