Nursing baby with Down's Syndrome

QUESTION: This is a question for my friend Chris, Riley's mom. Riley was born in fine health except that she has Down Syndrome. Her heart checked out fine, she nursed well right from the start and they went home 5 days ago.

I should mention that she has also had some bottle feedings, mostly of Christy's expressed milk, but also some formula the first day or two in the hospital while waiting for Christy's milk to come in, because Riley's blood sugar was a little low. Riley didn't pass the "car seat test" that the hospital gives to Down Syndrome kids, so she rode home in a car bed.

Their first few days at home were quite blissful and Chris was surprised at how much milk she was producing. The last day or so Chris has been worried because after such a great start, Riley has been just taking a few half hearted sucks and letting go, sometimes spitting out milk. She drank Chris's milk from a bottle, though, and when she was really hungry, after a long visit to the children's hospital for a check-up, Chris said she latched right on and fed well. She is a pretty quiet and undemanding baby, which I understand is sometimes the case with Down Syndrome, but maybe it is just her nature.

Chris offers her the breast if she doesn't ask after 2-3 hours, which generally she does (in her quiet way. - she hardly ever cries) Chris is really worried (a) that she is rejecting the breast, when it is even more important to her development than most babies, and (b) that she isn't getting enough to eat. Could she be not hungry so often? She's still not even 2 weeks old. Or is she nipple confused? Or is this possibly an example of the "lazy" aspect of some Down Syndrome babies.

Chris is a wonderful, very caring mother - and a worrier, so this is really hard on her. Can you offer any advice?
 

How lucky for your friend, Chris, that she has such a caring friend! There is nothing more important for a new breastfeeding mother than to have supportive people around her.

Because Chris will have to work a little harder at breastfeeding, it can be very helpful to share with her the extra benefits of breastfeeding a Down Syndrome baby: (1) Improved mouth and tongue coordination--eventually resulting in fewer speech problems (because breastfeeding benefits facial muscle tone.) (2) Protection from infection and bowel problems (babies with Down Syndrome are more prone to respiratory tract infections and bowel problems.) (3) Bonding and mothering skills--so very important because this will better help her to help her child reach her full potential in life.

No, Riley is not rejecting the breast. The reason she took milk out of a bottle is because it is easier--all she has to do is swallow! Most babies with Down Syndrome have low muscle tone. That is the reason that breastfeeding can be more difficult. (But it is also the very reason that breastfeeding can be so beneficial--it helps to develop all those muscles in the face and jaw.) These babies have difficulty cupping their tongue around the breast while nursing. Because the tongue is flat, the milk slides to the sides of the baby's mouth, rather than being immediately swallowed, resulting in more effort for less milk. Consequently, feedings take longer.

Down Syndrome babies are also more sleepy than others in the early weeks. Assure Chris that, as Riley grows, her muscle tone will improve and breastfeeding will get easier. Because a baby with Down Syndrome tends to be both sleepy and placid, Chris will have to set the pace for the feedings. This is not a situation where you can let the baby decide when it's feeding time. Here are some suggestions: Frequent feedings throughout the daytime should be a goal (every 2-3 hours). Lots of touching and skin-to-skin contact is beneficial. Baby slings are great for this purpose. Short frequent feedings (10 minutes minimum though) are much better than long feedings with long intervals in between. At feeding time, take off Riley's clothes down to the diaper, so there is more access to her skin. Mom can walk her fingers up and down her back, rub her feet, etc. to help her wake up better. Riley needs good support at the breast and may need jaw and chin support, so that she can put all her energy into nursing.

It would be very helpful for her to have a lactation consultant assist her with this. If Chris finds at the first weight check that Riley is not doing as well as expected, she can help out by pumping her breasts after feedings and then offering this milk to her with a cup, spoon, or eyedropper. (Make sure Riley is in a sitting position to reduce the chances of her choking) The hindmilk that is expressed at the end of a feeding is the highest in fat so can be very helpful for weight gain. La Leche League publishes a wonderful little brochures titled, "Breastfeeding the Baby with Down Syndrome." It is publication No. 23 and is available for $1.50. Their website is at www.lalecheleague.org or call 1-847-519-9585 or 847-519-7730 between 9am and 5pm central time.

If I can be of further help, please just let me know.

Cher Sealy, RN, BSN, IBCLC, LLLL

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