Breastfeeding My Child With Down syndrome:The Beginning and The End
Disability Down syndromeMy typically-developing firstborn, Micah, 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?
And so.
Moxie steadily lost weight.
She had been born a bonny 8.8lbs, healthy as a round, pink peach.
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. My milk supply wasn't blooming – I thought it was because of the nipple shield – I had no idea what was actually happening until…
I became paralyzed from my waist down in the course of a few hours. Excruciating, crippling pain.
I then spent over 14 hours in the emergency room, full of morphine, while doctors alternately forgot I was there or tried to figure out why I was paralyzed. They dilated and scraped my uterus twice. I hemorrhaged twice. A camera was placed in my innards via my belly button and a look-see was had, filling me later with inexplicable gas. I was on morphine and 3 types of antiobiotics and loads of other goodies. I couldn't walk. I escaped having a hysterectomy by a matter of hours. Hours.
I was there in the hospital for a full week. A tiny thing like going to the bathroom became a monumental task that could take me half an hour of sheer agony – just reaching the toilet.
In the hospital for a week, alone. Without my month-old precious baby that I was in love with and yet did not know how to proclaim her extra chromosome to the world. Without my 2 year old boy. Without my husband, my mother.
The problem, it turned out, was that the midwives had left about 3cm of placenta in me – which had become infected.
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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 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. Big tears fell from my eyes directly onto her small face, causing her to blink in surprise. Soon her whole face was wet.
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She howled. She didn't know what to do with it. She pushed me away. She howled harder. She wanted the bottle, dammit, not this fleshy bit of whatever being thrust at her!
And I cried more.
And tried again. And again. And again. And again. Sans nipple shield, every 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 insist that my daughter nurse? Why keep trying when it was so obvious that the bottle was working?
In the end…it was just that I had to. I loved her so much and believed wholeheartedly in the power of breast milk…and I could do no less.
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.
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.
Through learning to nurse my daughter, I began one of my first lessons in growing moxie. I started to tread the most meaningful path of my life: the one in which I finally start to trust myself, listen to my own self. Believe in the power of my Mother's Heart, as given to all mothers by the Source of Love (that we may call 'God').
May I never stop walking this path. May I never lose my gratitude.



I clicked on your link from Love that Max because of the post’s title. Beautiful, wonderful story. You go, mama. You rock.
Here’s my story of breastfeeding a child with special needs in return: http://aplacetowritethings.blogspot.com/2011/07/breastfeeding-my-daughter-who-just.html – at the bottom are links to other stories like yours and like mine (it was a “carnival” post). Best wishes!
Hey! Why not add your post to the summer blog hop series? The links ate open till aug 16th!
Thank you for sharing
Meriah
Thank you! Just did!
Oh i love this post!!! Good on you for being such a big nursing advocate and enjoying that amazing relationship with your daughter x as i could not nurse my firstborn ( brain injury from birthing) i truly adored feeding my second and now my third xxx
I am so happy you’ve been able to breastfeed your second and third! It must have been really hard to not, with your first.
Thanks for your comment.