Saturday, January 29, 2011

Breastfeeding and Down syndrome

About a month ago I worked with a baby with Down syndrome in the hospital for the first time. The family knew about baby's diagnosis in advance, and were prepared for the idea that nursing might not go quite as smoothly as with their other babies. While like many Down syndrome babies, this one appeared to have some low muscle tone, in the course of a single night we were able to transition him from finger feeding to breastfeeding with a shield to breastfeeding with no devices. It's likely that wasn't the end of their nursing story/challenges - I don't know because they were discharged the next day, and planned to follow up with LCs closer to their home - but it was really nice to see this baby getting off to a great start despite early concerns.

The Down Syndrome Pregnancy organization provides resources and support to families who have received a prenatal diagnosis of Down syndrome, and has a book called "Diagnosis to Delivery". According to their blog, the book has a whole chapter on breastfeeding, and they ask for additional stories from moms who worked on breastfeeding their babies with Down syndrome. The comments are a sampling of a huge range of experiences...from easy breastfeeding relationships, to challenges overcome both at the beginning and as breastfeeding progresses, to very significant issues that disrupted the breastfeeding relationship the mom hoped for and still grieves. There were also challenges common, although not unique, to Down syndrome infants, like cardiac concerns, prolonged NICU stays, and milk transfer/milk supply/weight gain concerns. Some excerpts:

At 3 months, she seemed to be less and less satisfied and my milk supply seemed to be going down. I did breast compressions but she then seemed to be sucking less hard and it was a downward spiral. At 4 months, I decided to supplement formula once a day.

I was then able to be prescribed Domperidone (not in USA)to improve my milk supply so at 5 months we were back to exclusive bf again and I was able to relax. She is now 6 months now, feeding great, and starting other foods.

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Once she was out of the hospital, I worked on nursing again. It wasn’t going well, so I called in a lactation consultant and she got us on the right track. We used a shield for a while so Amélie could latch on and control the flow. As her strength grew, she weaned herself off the shield. I ended up nursing her for about 21 months.

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I pumped and pumped and put her on the breast as much as I could and I still produced almost nothing. I fed her what little came out with a bottle.
On day 10 (at home) I was beyond frustrated and teary. My husband found Kellymom.com (a godsend!!) and learned about “nurse ins” — basically you get into bed, have lots of skin to skin contact with your baby and nurse and nurse and nurse for a whole weekend to get a relationship established. It was hard, but it worked! We literally didn’t leave the bed – I even got served meals there. After 2.5 days, Emlyn “got it” and my body kicked in and we nursed like champs.

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I pumped for her and she was tube fed. I still put her on the breast but the nurses convinced me that it wouldn’t work. I continued pumping for 6 months and kept tube feeding her at home with calories added.

I thought that after her heart surgery she might breastfeed but she never did. I was very upset and felt like a failure but the truth was that she got breastmilk for 6 months anyway.

I still think that if I had persevered she may have taken to it down the track. She is 5 now and wonderfully healthy and active so really it is just me second guessing my decision.

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She had an ASD and also couldn’t get her blood oxygen up. She wouldn’t nurse so on Day 3 we made the decision with her medical team to put her on a nasal feeding tube. I started pumping immediately and kept trying to nurse, but she just wouldn’t latch on and my anxiety and blood pressure went through the roof. Having nursed my older children successfully, I was very upset. She was able to get off the feeding tube by her due date and come home, but still wouldn’t nurse. So I pumped and gave her bottles eventually supplementing with formula for 6 months. Brigid never had a problem with food or formula and has been the healthiest of my 3 kids.

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When Calvin was 9 days post op, 4 months old, I put the bottles away and he has been nursing since! I weighed him before and after feedings to monitor his intake. He does not nurse as efficiently as my others. I have a blanket for drips and it takes a bit longer, but he is gaining weight and is happy.

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Ethan didn’t have any problems breastfeeding at first, but when i went back to work he had trouble switching back and forth between breast and bottle. I ended up having to stop because it became very hard on him. I pumped and fed him the breast milk strictly from the bottle but then had production problems. I breastfed my other children and think this helped (knowing how to breastfeed).



Many moms mention the importance of support from family, friends, and medical providers including nurses, pediatricians, and LCs. Any mother should try to surround herself with knowledgeable support, but it is particularly important for mothers of babies with Down syndrome or any special challenges. It's easy for family or medical staff, trying to be helpful, to discourage trying to breastfeed or to suggest that some babies "just can't" or it isn't worth the trouble. But these stories show that while some challenges just can't be overcome, some goals that seem impossible at first can be reached with support, belief, and perseverance. Many of the benefits babies receive from breastfeeding are particularly helpful for babies with Down syndrome, including better oral motor tone and immune protections for those with health issues.

If you or someone you know is looking for resources on breastfeeding a baby with Down syndrome, I suggest checking out Kellymom's resource page on Breastfeeding and Down syndrome.

4 comments:

bloodyshow said...

What a great set of resources. Thank you so much for this!

I worked with a mom who had a baby with Down's Syndrome and she did indeed have many breastfeeding issues. I think these links would at least have been comforting to her. I will have to keep this in my back pocket in case I encounter it again in the future.

Kelley said...

Thanks for posting this!
I'm actually the author of that first comment you excerpted and I'm also a newbie doula. I've just brought up the topic of doulas needing to awareness of disability diagnosis over at Full Spectrum Doulas in fact.

A request! Please call it Down syndrome. Not Down Syndrome and not Down's Syndrome. If you look at Downsydromepregnancy.org again, you'll see correct usage modeled. Thanks :)

Rebecca said...

Hi Kelley,

Thanks for the info! Fixed. I also checked out your post on Full Spectrum Doulas. (What a great community...I wish I had time for all the doula internetting in the world!) Very interesting stuff - would you be interested in expanding it for a guest post on this blog for what you think doulas can do to educate themselves, or what you think should be part of standard doula training?

Kelley said...

Thought I'd let you know that over at http://www.childrenshospital.org/clinicalservices/Site2845/mainpageS2845P8.html
the talk on April 5 2011 is on bf and DS and you can see it fully online plus get the handouts and powerpoint.

cheers!