Down Syndrome Breastfeeding Resources, Stories & Encouragement

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[vc_row][vc_column][vc_column_text]This post is about Down syndrome and breastfeeding.

It is written from my perspective as a mother. I breastfed my daughter with Down syndrome for 2 years, and breastfed my two typically developing sons. While I am pro-breastfeeding, breastfeeding was not an easy experience for me, nor did it come easily.

The purpose of this post is to encourage mothers of babies with Down syndrome to breastfeed and to provide some Down syndrome breastfeeding resources.

This post is NOT meant to shame anyone who did not breastfeed, because Fed is Best.

I just want to encourage other mothers to trust their gut and stick to what feels right for them and their baby, despite what medical professionals or even lactation consultants might be saying. I also want to encourage other moms to remember that our babies  with Down syndrome are BABIES FIRST –  they come with all the weird, wild an wacky combinations that all babies come with, and so do we.

Learning to breastfeed is a process, with or without the presence of an  extra chromosome.  We’ve got to remember that!

Please click on the table of contents below if you are looking for a specific component to breastfeeding a baby with Down syndrome, and click on the section that you are interested in.

Down syndrome and Breastfeeding

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My Back-story of Breastfeeding Before My Daughter with Down syndrome

The story of breastfeeding my child with 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.

The Story of Breastfeeding My Baby with Down syndrome

I knew that my daughter Moxie was coming with Down syndrome.

Knowing that, 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.

Nursing My Baby with Down syndrome

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.

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 people were telling me that babies with Down syndrome tend to have a weak latch?

So… I put the nipple shield on and tried that route, but Moxie steadily lost weight.

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

My little plump peach slowly shrank and shriveled to 6.8lbs. 

Yes, she lost 2 whole pounds in one month.

Down syndrome Feeding Issues

Down syndrome feeding issues are well known on the internet – if you google, you’ll come up with pages of information on Down syndrome feeding issues. And trust me, by that time, I was very busy on google, looking all of it up.

I was waking up Moxie every few hours to feed her. I was pumping and nursing round the clock. I was trying to stimulate my milk production. I was drinking gallons of coconut water and fenugreek tea.

Nothing seemed to make much difference.

After calling La Leche League, a specialist came to my house to take a look at everything and help us. She did, and yet with all of her experience, could not explain what was going on, nor could she give me helpful advice on why my milk supply wasn’t increasing, or why Moxie was losing so much weight.

The La Leche League consultant called another consultant over, and both of them concluded that it “must” simply be a Down syndrome feeding issue, that it must be something to do with Down syndrome.

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

Over the course of that week – the 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.

So, there had been no Down syndrome feeding issues; it had all been about placenta left in me after birth. The midwives had not known that placenta from a child with Down syndrome also has an extra chromosome, and that extra chromosome causes it to behave differently than “typical” placenta.

But no-one thought to look beyond Moxie’s Down syndrome at the time.

If she had NOT had Down syndrome, I wonder how things would have been different, and what types of questions nursing and lactation professionals would ask if a typically-developing baby lost 2 lbs in the course of their first month with their mother desperately trying to produce milk that just wasn’t fully coming in.

The Final Chapter in Breastfeeding My Baby 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.

****

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 videosand try pushing my breast in her mouth. Again.

And I cried more.

Then tried again. And again. And again. And again. Sans nipple shield, every. single. 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 hadto. 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 my milk dried up with a new pregnancy.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/2″][vc_single_image image=”50641″ img_size=”medium” alignment=”center”][/vc_column][vc_column width=”1/2″][vc_single_image image=”50640″ img_size=”medium” alignment=”center”][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]

Nursing my baby girl was a wonderful experience for me

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 who are unfamiliar with disability and/or Down syndrome  to fall into the traps of thinking we don’t know enough, that surely those “professionals” know what they are talking about.

Even me: I am deaf and have worked in disability advocacy and the disability community for nearly two decades and yet I still completely went the route of trusting them and doubting myself.

That’s the driving push behind writing this post; I want as much information out there to help support mothers who want to breastfeed and who may be looking for support and affirmation that it can work for a baby with Down syndrome, and that it is the first course to pursue if at all possible.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]

Down syndrome Breastfeeding Resources

Down syndrome Breastfeeding Print Resources

 The Breastfeeding Book: Everything You Need to Know About Nursing Your Child from Birth Through Weaning – The Sears’ youngest child has Down syndrome, and there is a chapter in this book devoted to Down syndrome and breastfeeding.

– The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood – comprehensive, down-to-earth book about pretty much everything.

 

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Down syndrome Breastfeeding Internet Resources

I combed through a lot of sites out there and only put the most relevant and recent content below:

Canadian Down Syndrome Society’s awesome free pdf that’s exclusively about babies with Down syndrome breastfeeding: Breastfeeding a Baby with Down Syndrome

Breastfeeding an Infant with Down Syndrome, from Children’s Hospitals and Clinics of Minnesota

Helping Babies Who Have Down Syndrome Learn to Breastfeed, by J. Renee Toth, posted on Motherhood International

Jack Newman, a Canadian doctor, was the most helpful to me in learning how to breastfeed my baby with Down syndrome. While not specifically about Down syndrome and breastfeeding, his videos and guides are clear, supportive, and really understandable. Jack Newman videos linked here.

La Leche League has such a great reputation and they have helped many, many people. I was not one of the mothers helped, despite turning to them with all 3 of my children. I hesitate to include this link, to be honest, because in reading through what the link contains, I feel like it’s perpetuating old stereotypes about our children. I mean, “often a baby with special needs is reluctant to take the breast..”?! They also go on about the “tongue protrusion” which just is not correct. But it’s your call. Link is here.

More stories about breastfeeding a baby with Down syndrome are found here on Down syndrome Pregnancy 

The power of community and asking questions to other parents: Down syndrome groups on Facebook

[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_video link=”https://www.youtube.com/watch?v=OZxExeaWvkc”][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]I went through the long list of resources on the internet and honestly, I just don’t feel like adding links for the sake of adding them. I don’t think anything else is as useful as what I’ve included in this post – either they are outdated by date, or they are outdated by content (one of the highest ranked sites in the “breastfeeding and down syndrome resources” on google linked to “Welcome to Holland.” Yes, really, and yes, I wish I was joking.

Anyway.

Again, this post is meant to be helpful and to encourage moms who want to breastfeed their babies with Down syndrome. While I do believe that breastfeeding has nutritional and emotional benefits that can’t be beat, the ultimate goal here is to feed our kids, and I think we need to be supportive of each other in how we determine (for ourselves) the best way to do that.

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