Thursday, October 21, 2010

31 for 21 - Breastfeeding a Baby with Down Syndrome

I thought I would post my article about 

Breastfeeding A Baby With Down Syndrome: 
One Mother's Experience

There is much to be said about nursing a baby with down syndrome. Probably the best way to sum it up is "lots of work". The most important thing is to not give up in trying to get the baby on the breast. Here is our story:
In February 2005 I gave birth to twins. Baby A was a boy weighing in at 5lbs 12oz. Baby B was a girl who weighed 5lbs 13oz. It was suspected after he was born that he had Down Syndrome and, it was confirmed by a chromosome test a week later. SInce I had nursed all of my previous children (9 of them), it was a no brainer that I would try to nurse the twins. Little did we realize how much work this was going to be. . .

I was unable to nurse our boy with DS the first few days because he was "out of it". I don't think he woke up or opened his eyes barely those first 2 days. When he finally did, he had all sorts of tubes going into or coming out of his little body, it was overwhelming. He was being "fed" an IV of various fluids and antibiotics were going in through his belly button. He also had to be under an oxygen tent and then had O2 coming out of his nose after that. Those 2 weeks in the NICU were a long 2 weeks.
Thankfully, we had an excellent group of nurses that I will always be thankful for. They put up with all of our questions and ideas and demands of things that we wanted to try yet, they also made sure that our little guy was being properly nourished. The first attempts at nursing him were difficult as he had little to no ability to suck (due to hypotonia). He would lay like a ragdoll in my arms with his arms hanging down at his sides. He never made any attempt to pick his hands up and place them at my breasts as he nursed. We had to force my nipple into his mouth and massage his cheeks and jaw to try to get him sucking. Then, it seemed, as soon as he would make an effort at sucking, he would fall back to sleep. We would strip him down, rub his feet, wipe him down with cold rags, poke him, prode him and even pinch his little heels. Many times it was to no avail because he would stay asleep. I would place him back in his little NICU crib, wrap him up in his little burrito blanket wrap and watch as the nurse hooked his feeding tube up to the gavage machine and systematically pump my milk into him. I would leave for a few hours, with tears running down my cheeks, to take care of his twin sister on the outside.
During this time, I was staying in a hotel close to the hospital going back and forth between the twins. I kept making sure that it was known that this baby was to never have a bottle. I wanted him to take to the breast and didn't want him to prefer sucking on a bottle over me. One of the head nurses even put a sign on his crib side that said "no bottle". So, it was try to nurse on me or have the gavage tube going from his nose to his stomach.
While I was at the hotel, I had a friend who was busy looking things up on the internet for me. She was looking for info on nursing a baby with DS. We eventually found out that our little guy would nurse better if I held him in basically a sitting position. Let's say I was nursing him on my right side - I would sit him on my right thigh, hold his head with my right hand and push his head onto my nipple. I actually had to put quite a bit of pressure on him to keep him latched on. If I didn't hold him on, he would just slip off of the nipple. With my left hand, I would help him open his mouth and also gently massage his cheeks to try to encourage him to nurse better. When he was done nursing, we would hold him upright for at least 30-45 minutes in order to let him digest his meal and try to prevent reflux from happening.
During this time, my husband began to think that we were getting nowhere, since the little guy always had a full belly (because of the gavage feedings). So, we came up with a plan and proposed it to Kathy (one of the head nurses). We asked if we could try to nurse him around the clock with no gavage feedings. We figured that if his little belly was hungry, we might be able to get him to nurse more at a feeding. She was all for it and gave us 24 hours to "prove" his ability, so to speak. The next day we began what we referred to as the "24-hour-boob-a-thon"!  We came into the NICU every 2 hours around the clock to nurse him. What a tiring time that was. My 2 oldest daughters were with me at the hotel. The hotel clerk must have thought we were nuts because we kept asking for wake-up calls every 2 hours. We would sleep for about an hour, wake-up, jump in our vehicle, race to the third floor of the NICU, nurse the baby then go back to the hotel and sleep for an hour. We had to prove to the doctors and nurses that he could breastfeed only in order for them to release him to us and let us take him home. During this nursing marathon, we also were weighing his diapers right before each feeding. This way we could see if he was actually intaking enough by measuring his output. After the 24 hours, Kathy was comfortable enough with what we were attempting to do and so, she pulled the gavage tube out of his nose. We still had several days ahead of us because the staff wasn't going to let him go home unless they were confident that he was going to survive on just the breast. Of course, this was only the beginning of our learning more about how much a baby with DS really needed to "survive". (See the section about weight gain to understand more about this).
After we returned to our house from the 2 weeks at the NICU, a lactation consultant contacted me. She wanted to use me as a case study because I was nursing twins and because one had DS. Together we began to figure out ways to get more milk down him. One way we discovered was to use his twin sister. We found that at times, we could let her nurse and bring the milk in, then take her off and put him on to nurse. Not only did this save him the extra work of sucking but, he was also able to benefit from the hind milk, which is way richer in fat than the foremilk.
The first time I met up with her, she also provided me with a breast pump and a device called an SNS (supplemental nursing system). This little unit was a major plus in getting some extra milk down at nursing time. Basically, the way it works is milk or formula is placed inside the bottle, a small tube is attached from the bottle to the mother's nipple, the bottle is inverted and hooked onto the mother's shirt at shoulder height and extra fluids can then come done the tube as the baby stimulates the nipple with his suckling. Using this machine, allowed us to get about an extra 20cc of milk down him at a nursing. This was a plus because at the time, we were going back to the hospital every 2 weeks for weight checks. Click here to see a picture of an SNS
We then were given a bigger SNS device, to try to get more down him. We figured, if he could handle it, maybe we could get him to eat more at a feeding and thus gain more (since this is what the hospital kept telling us they wanted). At this time, we were also learning more about the needs of a baby with down and actually began to learn that more, is not always better. With the larger SNS (2 tubes instead of 1 and also bigger in diameter), we found that it was to much for the baby to swallow at one time. He began to reflux greatly and choke and cough up more (see the section on GERD). Click here to see a picture of a bigger SNS
Another method that we tried was finger-feeding. The SNS feeder is used but, the tube is taped to your index finger. The finger is then inserted in the baby's mouth and the roof of the mouth is gently stimulated. The harder surface of the finger was easier at times for our little guy to suck on. Also, by rubbing the roof of the mouth, he was encouraged to develop his sucking ability. There are also things out there called nipple shields that can be worn directly on the woman's nipple to try to create a harder surface for the baby to latch onto. I tried these a few times but, preferred to finger feed him a few times a day. Click here to see a picture of a nipple shield
What we began to discover, is that a baby with DS cannot be compared to a baby without DS. It is already known that some babies with DS grow slower and ultimately, as an adult, most are shorter in stature than the average non-DS person. Most also suffer from hypotonia to some degree, so they tend to have a lower calorie need. Hence, they will typically not "need" as much food as an infant. This whole topic, of how much to try to get the baby to nurse and how much is actually necessary, is covered in our section on weight gain (coming soon, Lord willing).
As far as the area of nursing a baby with DS, we hope this article has been of some help to those of you who are wanting and willing to nurse your little one with DS. It is a longer road than a non-DS baby but, the benefits are well worth it. If we can be of any help or is you have any more questions as to how we did it (and are still doing it), please contact us at one of the following emails: kim@gotdownsyndrome.net or qf@gotdownsyndrome.net

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