"They said you can't breastfeed a baby with Down Syndrome."

I recently got an email from Rachael, a reader from Louisiana.  She wrote to submit a picture for the Nursing Around the World contest, but once she started telling me her story I knew that she should share it here.  Have a story you'd like to tell about nursing your baby?  Email me.

"My daughter Aileena was born with Down Syndrome.  We didn't know that she had it until after she was born, but even before that I knew that I wanted to breastfeed.  To me there is no choice.  I read books and took classes to prepare. 

When she was born they told me that since she has Down Syndrome she wouldn't be able to breastfeed, because Down Syndrome babies typically have low muscle tone.

But by that time she had already been at the breast a couple times, and the lactation consultant said she did great.  That night she started breathing funny so the nurse had a doctor look at her.  They told us that while they were examining her she turned blue so she had to be put on oxygen and put in the NICU.  So, we began the pumping road.  One of the things that really frustrated me was the fact that even though I was pumping they still added formula to my colostrum, because it wasn't enough "volume."  Anyone who knows anything about breastfeeding knows that babies are born with enough to sustain them until the mother's milk comes in.  I was mad because we had to use a bottle, but she was getting my milk and that was something.

Aileena was in the NICU for a week and they bottle fed her the whole time.  When she was almost ready to leave and they let the lactation consultant help me put her to the breast.  She didn't know what was going on by that point.  We tried a nipple shield and she cried and was confused, and I felt rejected.  We just kept trying and finally after about a week of that she took just me and rejects the plastic - ha! 

Well, that wasn't the end of it.  When she was 3 1/2 months old she had open heart surgery, and was on 3 medicines 3 times per day.  I had to feed her with the SNS (supplemental nursing system) with added formula because she got so tired when she ate because of her heart.  She wasn't getting enough and wasn't gaining weight. So her cardiologist wanted to increase her calories without having to increase her intake. That was a pain, but worth it and fairly simple to use - just a pain, because it was like bottle feeding - too much work!

She still doesn't feed perfectly and makes sounds, but she is definitely eating and gaining weight and is doing great even by normal standards,

I feel that she deserves the best I can give her, especially because she is different.  There have been so many benefits found with breastfeeding, and it is even more important for a child with Downs.  They need that extra boost for immunity and brain function, among other things.

I think the most important thing to remember about breastfeeding a child who has special needs is that, no matter how it's getting into them, they are getting your milk.  I had such a hard time with that, because even though she was getting my milk she wasn't at the breast and I wanted that closeness.  I guess that was selfish of me in a way, because the most important thing was that she get my milk whether it had to be put in a tube down her nose or by bottle.  Some babies with Downs have to be tube fed through their stomach, but it still gets there.

I do have to say that my husband has been there for me the whole time and without his support it would never have worked.  He was there when we had to sit in the car for an hour for her to eat every three hours before her surgery and he was there when I thought I couldn't do it anymore.  You really need a good support system to push you and be there for you."

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Comments

[RCM]

I LOVED this story. Thank you for sharing. Good for that momma!

[rachel903]

This so awesome. With all the benefits of breastmilk, I don't understand why a mom wouldn't breastfeed her baby. Way to go momma for making sure your baby gets the best!!!

[AshleyBenz]

What an awesome story! I will be directing a lot of people to your post.

[rValley]

"...she wasn't at the breast and I wanted that closeness. I guess that was selfish of me in a way..."

not selfish at all IMO you should have had all the contact possible and desired while your child was feeding.

[Tanya Lieberman]

rValley,

I knew someone would pick up on that!

I don't think that there's anything wrong or selfish for wanting closeness with your baby. My son was sick and in a nursery for a lot of his first week, and it killed my husband and me not to be able to have him with us all the time. It's a really normal and healthy feeling, I think.

Tanya

[emlynsmom]

Thank you for sharing this story. My 4mos old daughter also has Down syndrome and was in the NICU, being bottlefed for a week. It took us another week to get her back to the breast, but we did it and haven't looked back since! Like your daughter, mine doesn't feed perfectly but she's gaining weight great and is super healthy! And you're right about the support system - without my wonderful husband I wouldn't have been able to get through all the challenges. Congratulations on your baby!

[Tanya Lieberman]

emlynsmom,

Thanks for writing and sharing your story! It's awesome that you made it through the tough transition of getting your baby back to the breast.

Tanya

[Sinead]

This is such an inspirational story. What a wonderful family Aileena has had the good fortune to be born into. And I am so pleased to hear she is thriving.

[Tanya Lieberman]

Sent by email:

What a wonderful story Rachael. I'm so glad that your perseverence and dedication have paid off! You are an amazing mom. I don;t think you were selfish at all wanting to have your baby at the breast. I thik you were following your instincts! I'm glad that you have the strong support of your husband. I think support for a nursing mom is a common thread that we all share....we need lots of it!

I'm happy for you also, emlynsmom. Congrats om sticking with it. Special needs babies are especially in need of their mothers' milk!

Thanks for this really inspirational post, Tanya!
-Beth

[Mom of N&J]

Rachael,
Congratulations on your beautiful Aileena! My son, Joshua was also born with Down Syndrome and had jaundice and had to spend time in the NICU step-down unit. He is my second baby - I breastfed the first for 17 months and I fully intended to breastfeed Joshua as well. I was actually surprised when no one challenged me about breastfeeding my baby with DS - but as soon as I knew he had to go under the bili lights I asked for the pump. I did take every chance I could get to nurse him, but we did have some difficulty at first since he was so small. I didn't worry, but figured we would figure things out on our own once we were home and more comfortable. I was lucky that my milk came in quickly (? maybe because it was only 5 months since I stopped with my older son - the nurses were teasing me about trying to supply the whole nursery). At least this way I knew if he had to have a bottle, it was full of "THE GOOD STUFF!" Definitely the support makes a big difference - I was very fortunate to have excellent nurses on the floor and in the NICU who had such positive feelings about breastfeeding. Joshua is doing great and will be 1 year old next week (!) His early intervention therapists have all given the fact that he is breastfed a lot of the credit for why he is doing so well. I wish you and your beautiful daughter all the best. Keep up the good work and enjoy every minute.
Vikki

[Tanya Lieberman]

Vikki,

What a great story! So glad that you got good support in the hospital, and that you were able to move through the tough parts with confidence.

Thanks for sharing this!

Tanya