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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: 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. 

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