Nursing baby with Down syndrome – not easy but important

Yirmiyahu – (5 wks old)

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.

Yirmiyahu (5 wks)

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!


29 thoughts on “Nursing baby with Down syndrome – not easy but important

  1. I was wondering how this nursing around the clock is affecting your other children, especially the younger ones? I am not saying to ditch the nursing and switch to the bottle, but I wonder about the cumulative effect on the family.

    1. Obviously you are not talking to me, but your comment troubled me and I just needed to respond. First off, I had tremendous trouble nursing all three of my babies at the beginning . There were tongue-ties, high palettes, etc. With my first, with the use of the SNS and a pump, cleaning, and setting up the whole process took close to 16 hours a day. With my second and third, it took less time, but it was a lengthy time commitment, which lasted till my babies were around 3-4 months. My other children were with me through all of this as they have never been outside of my care. It may not have been a fun time for them (or me). but it was a learning experience and it was also a small amount of time in the big scheme of things. My children learned 1) breastfeeding is very important 2) the virtue of patience 3) that the needs of a totally helpless infant are paramount. Lest you think my children were neglected in anyway, you would be wrong. I mean seriously, things happen in families and its not always smooth sailing. Some mothers are put on bed rest, some mothers get PPD, some mothers break a leg and can’t move….children need to be able to adapt to circumstances in life and know that it’s not always about going to the park, and I think when children are securely attached and know how much they are cared for, this is not an issue.Oh, and my hard work paid off as my older children nursed till they self-weaned around their second birthdays, and at 16 months my baby and I are going strong.

    2. I can also speak to this. I have a child with short-term special needs (she’ll only need the special care for the next year at most, and then we’ll be able to return to “normal”).
      When you have a child that needs so much more care than standard, It does take a toll. But the same way a challenge can rip a family apart, it can also pull the family together. The parent’s attitude is the glue that holds the family together. Part of it is that all my kids know that lengths I go to for their littlest sister is something I would do for any of them. Part of it is the knowledge that they are valued members of our family, and that we are all in this together. And part of it is sheer will on my part: “I will carry us all through this!”
      This is true of every challenge any family will face: do you use it to pull everyone together, or do you allow it to take over and let everyone fall apart?

    3. Ilana, I’ll respond to this in a post in the next few days. It’s a good question! I think the points that both Dina and raisingwings made are really important.

  2. I always learn so much from you and your stories about your family, Avivah. You all should go from strength to strength! Thank you for allowing us to continue to share your journey.

  3. When you pump do you do it while you’re nursing? It may cut down on the amount of time you are involved in the feeding process. Also have you looked into finding a source of extra donated breastmilk?

    1. I can’t pump and nurse simultaneously because I need both hands to help the baby stay latched on. I have enough milk, BH, so I’m not in need of any from other women.

      1. There is a way you can do hands free pumping. I used to do it all the time when my baby was little and I was needing to store up milk to go to school.

  4. I think the majority of mothers of T21 babies don’t have experience of having nursed 9 babies before this one. So they are probably not confident in their nursing capabilities in general.
    Stay strong! Hope he learns to nurse soon!

  5. The most daunting part of my nursing experience was the pain, just reading about latching on and off every second or minute is making me cringe. I’ve heard this is normal, even after several births(this was my first). Do you experience that? How do you deal with it? I also got through the first six weeks thinking how important it was for my baby, but I couldn’t imagine it as you described this experience.

    1. Aderet – that’s what my husband said, that there must be an advantage having nursed so many babies before this one!

      Sharon – that sounds really hard! Initially the latching on was uncomfortable but it’s gotten easier with time. When he relatches on it’s definitely not the same kind of sensation as in the very beginning, even when we were starting off. So you can stop cringing. :) :) I don’t want my blog readers to suffer when they read what I write!

  6. I have an online friend who nursed her baby with Down’s … she said it took several months (5?) for him to get really comfortable with nursing but she stuck with it anyway since it was so important.

    You’re still pretty early on this journey, but it sounds like you’re doing everything right. sorry the doctors aren’t exactly onboard.

  7. My friend who is certified as an LC and is training as an IBCLC just moved to Karmiel. It sounds like you’re on the way up out of the initial issues as your baby gets stronger (good for you for thinking of it as oral therapy — I edited a book regarding the oral motor skills nursing provides!)…but if you want to reach out to her, let me know, and I can get you in contact with her.

    1. Miriam – I’ve read online about a number of women who nursed babies with T21 and for many of them it took months. Knowing that gave me a lot of encouragement, because I was able to see this is typical and it’s just a matter of ‘keep on keeping on’ and eventually we’ll get there.

      LN – I’d love her contact information; at this point I don’t need lactation consulting help (I don’t think so, anyway!), but it would be great to know who she is.

  8. I read your post last night but didn’t have time to respond. I came back now to respond and see the sweet recommendation above! Putting on my LC cap here… :-)

    I would recommend using a nipple shield since it’s easier for babies with low tone to maintain their latch this way. He can probably take in most (or maybe even all!) of what he needs through *almost* direct nursing. You might still have to pump a few times a day to supplement and/or keep up your supply since you won’t be getting the same stimulation through a nipple shield. This is a temporary solution, and as he gets stronger you can slowly wean him off the shield.

    1. Great information, thank you, Rena! (And welcome!) I had read about this earlier on when I was researching tips to facilitate nursing him but felt a bit limited by how/where to buy these things around here. Fortunately we managed to get to where we are without them, even though I’m sure it would have made things easier!

      1. Thanks, and looking forward to meeting you one day. :-)

        Most pharmacies in the center sell Medela nursing accessories…next time I’m near a pharmacy I’ll pop in to see what they have. I sell them, too.

    1. I really do feel like we’re over the hardest part. I’m enjoying nursing him for every feeding (the supplemental bottle is given about fifty percent of the time after I nurse him), and feel like it’s just a matter of time until we fully make the transition.

      I really appreciate all the encouragement and helpful information from everyone!

  9. In terms of getting any extra nursing supplies like a shield or SNS or storage bags I find that shilav sometimes has. And with the price of the doar – everything can be shipped within israel for a very decent price.

  10. Avivah, I know I wrote you of my experiences with nursing Yosef in the begining, but I don’t remember exactly what I wrote LOL. The nipple shields used today are actually pretty good and we did use one for a while and it actually helped with yosef to latch. While there are the benefits of the experience from nursing so many babies, there is the disadvantage of the breast tissue and even the nipple being less firm …therefore more of a challenge for a baby with low tone:) the dancer hold should help as well as suck training done a few times a day. I hear you about not being able to nurse and pump at the same time since you need to support his jaw. Most babies with T21 have difficulty gaining in the first few weeks (even formula fed) and many dr.s recommend supplementing with formula calorie enhancer. We also went through the difficulty of slow weight gain in the begining and dr pressuring to supplement. Luckily, I worked with an amazing LC who came to my home a few times in the first few weeks and we were able to get through without the supplementing….it was stressful. But even though he was gaining very slowly , he was otherwise, going through enough diapers and was alert, so i knew he was o.k. For us the switch to full time nursing was 2 months, for one of my friends it was 3 months. It is a very intense time. The oral therapy of breastfeeding is like no other and effects not only their tongue control at a early age and their jaw but even the facial features! All positive! If you can get more CST that helps too:) It sounds like your are almost there and while it is probably really stressful for everyone in the family, G-D willing they will all be even better people because of it :)

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