When Yirmiyahu was born, I wasn’t able to nurse him right away – we were rushed to the hospital in an ambulance, then the nurses kept him in the nursery for hours until I finally saw him. At that point, he was in the deep sleep that newborns go into a couple of hours after birth, and nothing could induce him to wake up.
That was before that we realized there were medical issues or Down syndrome; then he was transferred to the NICU. For the first week he was there, he was on a feeding tube. When they told me he was strong enough to start nursing, it was very slow. Initially he couldn’t get latched on, then once he could latch on, he couldn’t stay latched on for more than a second. It was very challenging to teach him to latch on and I had to do it again, and again, and again (at five weeks old, he’s getting the hang of it but doesn’t latch on for more than a minute and never does it without my help, so he still needs a lot of assistance with this).
I continued pumping (he had gotten my milk from the first day via the feeding tube) and hoping that he’d get strong enough to nurse fully, but it was very discouraging. He was such an easy baby, hardly crying at all – the exceptions were when he got a blood test and had a bris, and even then he stopped crying as soon as it was finished. So you can imagine how hard it was when he would scream and scream as if he were in pain every time I tried to nurse him.
After three weeks, I contacted a local La Leche League leader for help. I’ve nursed nine babies before this and never needed the assistance of a lactation consultant, but this was a different situation. Since he was getting most of his nutritive needs via a bottle, I was concerned that he’d have a hard time transitioning to just nursing since the way a baby uses his mouth when nursing or when drinking from a bottle is so different. I specifically asked about the SNS, supplemental nursing system. She was eager to help until she heard that he had Down syndrome – then she told me that she didn’t have experience with that and gave me the number of a friend of hers who successfully nursed her daughter (who had DS) for two years. But I wasn’t interested in traveling to yet another city to meet with her.
Anyway, the LLL leader met me on her way out of the city for Shabbos, and gave me the scaled down equivalent of an SNS – a feeding tube. I told her I could work out how to use it with the help of the internet, and dh got busy rigging a makeshift SNS system for me (my husband is very good at finding creative solutions!). When I tried to use that, I came very close to crying or screaming with frustration. I ended up flinging it off and later put it away in the kitchen cabinet, where it’s never emerged from since.
A lot of time was being taken up every day with the feeding process: I’d nurse him, pump, then give him a bottle so he’d actually be full. It was very tiring and time consuming, so much so that it felt close to a full time job sometimes. At one point, a good friend responded to my exhaustion and told me I wouldn’t be any less of a mother if I just gave him formula. And she’s right, I wouldn’t be. Breastfeeding isn’t what makes you a good mother; how you parent does.
But even though it was so demanding, I felt like this was something I had to do for him. Babies with Trisomy 21 have weak facial muscles and this is a big part of why breastfeeding can be so challenging – they often lack the oral strength for nursing (his weak muscle tone in his tongue was responsible for his episodes of apnea when he was in the NICU). Most babies with T21 develop tongue protrusion, and this practice is encouraged by bottle feeding. That’s not something I want to encourage. Nursing can help prevent this from becoming an issue – an excellent article that I read by a well-known speech therapist detailed how some of the features associated with Down syndrome are part of a cascade of consequences that begins with bottle feeding. It’s called The Oral Motor Myths of Down Syndrome. Breastfeeding is an oral workout for a baby, since it works the facial muscles, including the tongue. So I think of every nursing session as oral motor therapy for him.
Nutritionally Yirmiyahu needs the qualities of mother’s milk since his health was compromised when he was born, and also because it’s typical of those with T21 that they have weaker immune systems. Studies have also shown that breastfed infants have IQs that average 5 – 10 points higher than bottle fed babies. I’ve never thought of this as a big deal with neurotypical children, but it’s worth the short term discomfort and pressure for me in order to give Yirmiyahu this long term benefit; there’s a lot I can’t control or change about him having Down syndrome but this is something that I can do.
I had pressure from his doctors to stop nursing him and give him formula. This was because his weight didn’t go up for the first few days after he came home from the hospital. I wasn’t worried, since I saw he had plenty of wet and dirty diapers, but they were concerned. But the numbers on the scale were more important than my opinion in this case. It would have been so, so easy to quit. It’s challenging to be working so hard at something and then to be told that your baby is better off without your efforts.
I’m not yet at the stage of fully nursing; I’m still pumping for about fifty percent of feedings. When I nurse him, it takes a long, long time, and often he’s still hungry forty five minutes later; in those cases, we give him a bottle afterward. But we’re getting there and I’m confident that we’ll make the transition to full nursing. Most mothers with babies who have T21 don’t nurse them, because the experience can be so daunting. I totally understand them! The main thing that helped me was remembering why I felt this was important, keeping my eye on my goal. And the other aspect of this was not giving up. Sometimes you have to keep on keeping on when you have tough situations to get through, and this is no exception. Persistence, persistence, persistence!