Thursday, October 7, 2010

Down Syndrome Awareness Month: Breast Feeding a Baby With Down Syndrome

DISCLAIMER: I do have a decidedly pro-breast feeding bent. However, this post is not intended to judge or criticize anyone who chooses not to, or who for whatever reason can't, breast feed. My intention is only to share my own experience in the hope of correcting some misconceptions and giving hope and encouragement to any new moms out there who would like to breast feed their new baby with Down syndrome.


One of the many widely-held misconceptions about Down syndrome is that babies with Down syndrome won't be able to breast feed. This notion, I think, is propagated by medical professionals who, sadly, are still a generation or two behind in the perceptions they have about Down syndrome in general (this outdated knowledge base is also a factor behind the high termination rate in prenatally diagnosed cases of Ds, but I'll get to that in another post).

I'm not a medical professional or a trained lactation expert. I'm just a mom who, before Finn was born, successfully nursed five babies for the long-haul, and was determined to breast feed my sixth baby who has Down syndrome. And I'm here to tell you that the notion that babies with Ds can't breast feed is misguided.

Breast feeding a baby with Ds can be challenging. The two main things associated with Ds that can hinder breast feeding are low muscle tone, and immediate and prolonged separation of mom and baby due to issues the baby might have that require a prolonged stay in the NICU. These two scenarios are not a given with all babies with Down syndrome; not every baby with Down syndrome is faced with difficulties in breastfeeding to begin with, but difficulties are not uncommon.

One of the most common traits of babies and people with Down syndrome is hypotonia, or low muscle tone. What this means is that their muscles tend to be lax, and their overall posture in infancy might be described as "floppy." This low muscle tone can hinder a baby's ability to effectively latch on and suck, and a poor latch and a weak suck hinders mom's ability to produce milk, and so a vicious cycle is set in motion: the baby has trouble with latch and suck, therefore mom doesn't produce ample milk, therefore the baby doesn't get enough and gains weight poorly, therefore supplementation with formula may be implemented, causing the baby's interest in the breast to lessen, resulting in even less milk production by mom, resulting in complete abandonment of breast feeding and a confirmation of the belief that babies with Ds can't breast feed.

The other scenario occurs when a baby with Ds is born with medical issues that necessitate separation from mom, and perhaps precludes oral feeds. The inability to establish breast feeding within the first few hours after baby's birth can definitely inhibit breast feeding, and certainly the longer mom and baby are unable to nurse because of the baby's medical issues, the harder establishing breast feeding will be.

Combine those two situations and you definitely have an uphill battle!

However, with perseverence and the right kind of support, in a lot of these cases the hurdles can be overcome, and a happy breast feeding relationship can be established.

Since I'm not a trained lactation expert, I won't try to set forth specific techniques on how to overcome the challenges most commonly faced in breast feeding a baby with Down syndrome, but I'll share my own experience with Finn:

Finn has always actually had pretty good muscle tone. I'm sure he's got lower tone that his "typical" peers, but he's never been noticeably "floppy" or overly-flexible. So whether low muscle tone played a part in our nursing challenges, I really can't say.

What did most definitely stand in the way was his almost immediate hospitalization and inability to take oral feeds for over a week. As I described in my last post, Finn was born at home, and we had him at home with us for roughly a half a day before we had to rush him to the ER because he was spitting up blood. In those first few hours after he was born, he was so sleepy, and he never really woke up enough to latch on well and nurse. Then we took him to the ER where he was hooked up to all kinds of tubes, wires, and monitors. By that evening, he was diagnosed with an intestinal blockage and admitted to the NICU. He had surgery the following morning to correct his duodenal atresia. This was major gastric surgery which involved a 3-inch incision in his abdomen, cutting the ends of his unattached bowel and attaching those ends, and also the removal of his appendix while they were at it. While his intestines healed, he could not take any nutrition by mouth; he was fed intravenously for several days before I was allowed to attempt nursing. My milk came in during that time, and I began pumping at regular intervals around the clock and storing my milk for him to take when he would be able to. I already knew that he'd most likely have to start with bottle feeding, and it became clear to me pretty quickly that we had some major challenges ahead of us.

I was pretty heartbroken at the prospect of possibly never being able to nurse him. For me personally, breast feeding is just a huge part of how I mother my babies, and I could hardly fathom not being able to share that with Finn.

Fortunately, when he was ready to tolerate oral feeds, the nurses in the NICU were pretty supportive of my desire to breast feed, though it was frustrating because everything in the NICU had to occur by the clock and by the numbers. He had to be fed on the schedule the nursing staff set down for him, and if I couldn't make it to the hospital in time, he was given a bottle (of breast milk). If I was there to nurse him, he had to latch on within a certain number of minutes or I was made to call it quits and give him a bottle. The same went if he didn't take the prescribed number of ounces in the time allotted (they would weigh him on a specially-calibrated breast feeding scale before and after I nursed him to see how much he had taken; if he spit up, the napkin he spit up on was weighed and subtracted from the number of ounces he had been fed). It was all very stressful, and I spent a lot of time crying. The stress and the pressure didn't go very far in helping us get a good breast feeding relationship established. There were lactation consultants on hand, and they were helpful, but all in all, it was a frustrating, discouraging situation.

Convinced that Finn would do better at home where I could nurse him around the clock without the constant supervision and vigilance of the nursing staff, I couldn't wait to get him out of the hospital. When he was discharged twelve days after he had been admitted, we were nursing, but it was hit or miss, and I was using nipple shields because he seemed to do better with the rigid shape of the shields which were similar to the bottle nipples he was already becoming used to. I would nurse him and then Michael would follow up with a bottle of expressed breast milk to make sure he was getting enough.

As I suspected, he did seem to do better once we got home, and within a couple of days I was able to ditch the nipple shields. He was latching on well (it seemed), and nursing well (it seemed). It wasn't long before we stopped supplementing with bottles of breast milk, and I was exclusively nursing him.

However, he wasn't gaining weight. He was 6 pounds even at birth, and lost the typical several ounces that babies lose directly after birth, then lost more after his surgery. I think in the NICU he went as low as around 5 pounds. By the time he was discharged, he was back up to his birth weight, but a week after being home, he was still at 6 pounds, and after another week or so, he only gained an ounce or two.

I'll never forget our pediatrician - whom I love for the most part - sending me home with several cans of formula and telling me that Finn most likely just wasn't going to ever be able to nurse well because of his Down syndrome. I was devastated. None of my babies had ever received formula, and I felt like a failure.

Fortunately, my midwife insisted that (a) if I was going to supplement, it should be with the breastmilk I had stored while Finn was in the NICU, and (b) I needed to find a really good lactation consultant. I did both. I found a lactation consultant who refused to believe that Finn wouldn't nurse because he had Ds. Yes, it was going to be a challenge, but it could be done, she insisted. She set me up with a SNS (supplemental nursing system) and spent oodles of time with me and Finn over the course of several appointments, observing us and giving me tips on positioning, etc.

Despite my perception that Finn had learned how to latch and nurse well, it apparently wasn't the case, and because he actually wasn't latching properly and his suck wasn't great, my milk production went down, so he wasn't getting enough, and the cycle was set in motion. With the LC's help, though, we were, finally, over time, able to overcome the hurdles that were in place. Unfortunately, my milk production never recovered on its own and I began taking herbal supplements to increase my milk production (fenugreek and blessed thistle), which helped to a degree for a time, but eventually I began taking Domperidone, which helped immensely, and really, was the final missing puzzle piece for us.

At twenty-seven months old, Finn is still nursing. He's had a couple of nursing strikes during periods of teething, but he's come back to it each time. At this point, it's probably as much for me as it is for him. He's my last baby, and I guess I'm having a hard time letting go.

Getting breast feeding going was definitely an uphill battle for us, but through perseverance and good support, we were able to make it work, and it's been completely worth it to me.

Writing it all out at this point, I can see how it might look more daunting than it's worth. Not everyone will want to go to those lengths (and not everyone will face the same, or any, difficulties). But for anyone who has their heart set on breast feeding their baby with Down syndrome, I guess the moral of my story is that it can be done.


Kara @ His, Hers and Ours said...

Hi Lisa! I followed your lodge over at, and had a baby girl in August of '08.

I remember when Finn was born, and all of the hurdles you had to overcome. I've been away from the blog world for several months, and I'm finally getting caught up. I just wanted to say that I'm absolutely amazed that you are still breastfeeding!

I know that you never took no for an answer, and this proves it in so many ways! I'm so happy to see Finn doing so well. He is just a doll!! I know that this post will give hope to new moms that may worry about nursing their Ds baby.

Megan and family said...

Thanks for the great post! I've already started to forget about the breastfeeding struggles I had in the beginning. My daughter with Ds is my first child so I didn't know what to expect with breastfeeding, but I was determined to do it! Unfortunately we had a lot of trouble for many of the reasons you list. But I just couldn't give in to formula even though she was getting most of her calories from a bottle (with breast milk that I pumped).

After 5 or 6 weeks of lots of stress and crying and worry and still no success with her latching, I decided an unhappy Mommy wasn't a good thing. A lactation consultant from the hospital who had a child with hypotonia (not Ds though) had taught me about pumping and convinced me it could be done long term. I found a great book about "Exclusively Pumping Breast Milk" (by Stephanie Casemore) and did it successfully for 6 months. I could've done it for longer, but I wanted more freedom than I had with pumping 8 times a day. So my daughter had only breast milk for the first 6 months, but I was grateful for the chance to give her at least that long!

Monica said...

It's definitely worth it if Mom and Baby can do it. John Michael had relatively good tone and after he was home from the NICU on the 8th day, he learned to breastfeed solely by the 5th day. Like you, I'd nursed 3 other babies before him and really wanted him to have the same benefit. He went for 11 months before biting a hole in me. He went on a strike and we decided together that it was time to quit, but I'm grateful for the 11 months we had. I love that Finn is still nursing some.

Mel said...

What an amazing mother you are. Luke had difficulty latching on one side as I had a flat nipple on one side (too much info?!) so used a nipple shield on that side until he could manage without it. He is my only baby to lose weight, but I breast-fed him for 19 months, which had so many benefits for both of us and I'm sure is part of the reason his speech and vision are so good now. (That and good luck). We have a real culture of breast-feeding over here, and like you I also had a supportive midwife as well as paediatrician.

Jaida said...

Great post! I just thought I would say, while I LOVE 31 for 21 and all who participate, I also think you are making an amazing contribution here with your well thought-out posts on a few topics of your choosing. This was an especially good post, and in the volatile climate surrounding the topic of breastfeeding you manage to be supportive and informative without being judgmental. Well done!

doozee said...

Moxie's exclusively breast fed now... but we had to learn how to breast feed at something like 10 weeks. That was due to 1) everyone telling me that I couldn't breast feed a baby with Ds and me believing them and 2) the Placenta Incident (5cm of placenta was left in me after my home birth... ).
I got to the point where I didn't listen to anyone anymore and just tuned in to my inner instinct. And to the Jack Newman videos. And Moxie got it!
She's now 5 months old, about 13 lbs and pure breastmilk. Hot diggity.

SunflowerStories said...

Lisa, I agree, you did a wonderful job on this post! Thanks for sharing your story. If more mothers hear of others succeeding at breastfeeding their baby with Ds, then they will feel encouraged to try.

You and Finn have had so many ups & downs in your breastfeeding journey- I remember the early months of slow weight gain and then his nursing strikes and slow transition to solids. You've done a wonderful job meeting his needs and listening to your heart.

Remember what Dr Sears says, "when a need is met, it is no longer asked for." If Finn is still nursing, it's as much for his benefit as it is yours.

Anonymous said...

Thank you so much for this post! I am due in 12 days with our daughter who has Ds, and have breastfed our previous 3 children for at least a year. Breastfeeding with Ds is one of my anxieties that still haunts me, so thank you so much for your honest, informational, and encouraging post. :)

Annie @ The House That Jade Built said...

Thank you for this post! My husband & I are due with baby #3 in February & they highly suspect we have a baby with DS because of our bloodwork, 3 soft markers, & also a possible heart defect. We passed on the amnio b/c of the risks so really nothing is certain until February, but we are preparing ourselves as if baby has DS. I have been reading everything I can to be educated on DS with baby Ollie arrives. One of my biggest concerns was nursing because everything you read says you can't nurse a DS baby. I nursed both my other children and it was killing me that this may be impossible or terribly difficult. Fortunately my hospital has an awesome lactation consultant & I think she'll be a huge help & I've already talked with her briefly and she's all for nursing our baby. I had a very hard go with my first baby - it took a good 2 weeks to get her nursing well. So I'm willing to put in the work & with all your suggestions & experience I know I can do it & have some ideas of what to try if baby has issues at birth to separate us. Thank you so so much for this post!! It seriously is a huge help to me & great encouragement :)