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."