Breastfeeding My Child With Down syndrome

The story of breastfeeding my  Down syndrome is a story that has a necessary prequel, the one about breastfeeding my first born (typically-developing) child:

My typically-developing firstborn son was born in the hospital as a planned C-section due to the fact that he was breech. After he was born, He had trouble latching. The lactation consultants on hand said that his frenulum (the bit of skin that attached your tongue to your mouth) was short and that was the root of the problem. The suggested that I either cut his frenulum or use a nipple shield.

Unable to bear the thought of hurting him, I chose the nipple shield. The lactation specialists said that it was fine, that using it would make nursing that much easier for him. That it was just a bit of plastic that wouldn’t cause any trouble at all.

I believed them…and over the course of the next 9 months, I saw my milk supply steadily dwindle. I never made enough milk to fully feed my boy, ever. I didn’t understand it – other women made plenty of milk and I simply could not understand why I couldn’t. I did everything – I took herbs to stimulate my milk production, ate foods that were good for supply building. I pumped a lot in addition to trying to nurse. But it simply did not happen.

Over time, I became convinced that it was the nipple shield. The only thing, you see, that was different from me and the women who were producing well was that bit of plastic: I was using it and they were not. When I started to think about it, it made no sense that my milk could actually come in well – my senses were dulled with the plastic around my nipple – how could I really receive the stimulation that my body needed from my baby to produce more? Because it’s really through the aerola that the body picks up on the need to make more/less milk.

Micah was naturally weaned when I became pregnant with Ziggy – my milk supply completely dried up and Micah was quite happy to simply go for the bottle full time.

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As I knew that Moxie was coming with Down syndrome. I was completely determined that she be 100% breastfed for as long as possible. Starting out life with an intellectual disability was hard enough, I reckoned. Why not give her every advantage I possibly could? A home-birth, sans drugs (which might hurt her), coupled with as much breast milk as she could handle.

I had the home birth.

22 hours.


After she was born, she nursed, and nursed hard.

The next day, we were trying again and it wasn’t happening well. I, having no real experience nursing a child naturally, was completely green. The midwife was intimidated by Moxie’s Down syndrome and said it was likely that because she has Down syndrome, she couldn’t latch well. She pulled out the nipple shield.

I put it on. While I abhorred going that route again, I too was intimidated by Down syndrome. What did I know of anything? What if her latch really was weak? She had nursed what seemed to be hard the previous night, but how could I really tell, when I didn’t know about these things at all?

But Moxie steadily lost weight.

She had been born a bonny 8.8lbs, healthy as a round, pink peach.

Breastfeeding My Child With Down syndrome

She slowly shrank and shriveled to 6.8lbs. Yes, she lost 2 whole pounds in one month.

I was pumping and nursing round the clock. Nothing seemed to make much difference. I called in a La Leche League specialist who could not explain what was going on, nor could she give me helpful advice on why my milk supply wasn’t blooming. I was down to blaming the nipple shield until…

I suddenly became paralyzed with excruciating, crippling pain from my waist down in the course of a few hours.

Over the course of the next week that I spent in the hospital all alone without my baby or family, I hemorrhaged, had transfusions, innard-cameras, two uterus dilations and scrapings and a raging fever. Ultimately, I was told that the midwives had left about 3cm of placenta in me – which had become infected. That had been the source of my milk loss and inability to feed Moxie.

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Breastfeeding my child with Down syndrome

When I came home, I was still being fed a solid diet of drugs and although the doctors said it was safe to breastfeed, they had never done studies on the effects of those drugs on humans. As such, I wasn’t going to give it a shot with my Moxie. So I pumped and dumped for one month while my tiny daughter was exclusively formula bottle-fed.

Finally. Finally: when she was a little over 8 weeks old, we tried to breast feed again.

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I will never forget the feeling of being so weak. My body had been so crushed by the Placenta Incident, so whipped by the drugs, but the pain, so worn out from the process of healing and hurt that I simply sat there, with Moxie on my lap, and cried over her as I tried to get her to nurse from my breast. I remember how big tears fell from my eyes directly onto her small face, causing her to blink in surprise. 

She howled with the breastfeeding effort. She didn’t know what to do with it. She pushed me away. She howled harder. She had no idea how to nurse, and I honestly wasn’t quite sure what to do other than watch some Jack Newman videos and try pushing my breast in her mouth. Again

And I cried more.

And tried again. And again. And again. And again. Sans nipple shield, every. single. fucking. time.

I tried so much, so often that sometimes I wondered if I was simply a glutton for punishment; why do this? Everyone said babies with Down syndrome had a hard time nursing. Why was I pushing it? I think breast is best of course, but FED is amazing, full stop. I am not against formula – it saved Moxie’s life for the first 2 months, after all.

In the end…it was just that I had to. This was just something I had to go through and I had to know for myself that I tried as hard as I could – and if it didn’t work, I could put it in the bag and store it and reach for the formula knowing that was cool.

Finally – two or three weeks into the trying – Moxie caught on. Latched on. And never looked back.  She was exclusively breastfed until she was over a year old, with the exception of the introduction of solid food. She continued to be breastfed (and drink cow’s milk) until Monday, April 9th when we simply skipped the single daily nursing that we had dropped down to. We stopped for the same reason I stopped with Micah: because I am pregnant, my milk isn’t coming. There really isn’t anything there for Moxie anymore.

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Nursing my baby girl was everything I thought it could and would be and then some.

Breastfeeding My Child With Down syndrome

Without a nipple shield and without placenta in me, I was fully capable of meeting all of her needs. Moxie has been sick only a couple of times in her life – if only we were all so lucky! – and I give breast milk ample credit for its immunity-building.

Moxie is clever – she has a developmental disability, yes, but she is an extremely smart child with few delays. I think part of that is due to breast milk. She is secure, she is attached – again, I think that can at least partially be attributed to almost two years of nursing.


People have a myriad of assumptions about children with Down syndrome. It is all too easy for new parents and those without any true experience to fall into the traps of thinking we don’t know enough, that surely those “professionals” know what they are talking about.

Addendum

It’s been over a year since I wrote this post. I had Mack (the baby that I was pregnant with) and was thrown another hard one in the business of breastfeeding with him. I think I know as thoroughly as I will ever know that there are no hard and fast answers to anything – that some people can try to breastfeed until they are sobbing over the heads of their children (- as I did) – and it will work for them – and for others, it just won’t. It won’t.

This post isn’t meant to be one, telling you to do this or that. That is not my intent. Rather, I want to encourage us to remember that children with Down syndrome are children – always children! – and the extra chromosome should not intimidate any of us to pay attention to it first. Do you know what I am saying? Because professionals who say we can’t nurse our kids with Down syndrome are often wrong. Take what they say with a grain of salt and take what your heart feels and run with it. You know best, Mama.

And for the mother that feeds her baby formula? I can’t help but think the stuff is a miracle that I am personally intensely grateful for.

And for the mother that pumps? You are amazing. You are fierce. You are strong. I admire you with all of my heart because that takes intense dedication and love. Nothing beats the pump/hell.

That’s it. I’ve said my piece.

xoxo love from, Meriah

 

Meriah

is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).

She likes her coffee black and hot.


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