Stephanie, Noel, and Darrah

My name is Stephanie. Right now, I have two children- my son, Noel, who is three, and my daughter, Darrah, who is 15 months old. Before, though, before I was a mom-to-two, I was just trying to have a baby. I had lots of plans of how it was going to be- and my husband and I had been trying to have a baby for almost five years before I got pregnant via IVF, so I had plenty of time to make plans.
I was going to have my baby in a birth center, with a midwife. I was going to breastfeed immediately, I was going to have a blissful pregnancy and everything was going to be easy and perfect.

Well, I got pregnant. I was really good at it. I measured exactly right at all my appointments, I felt awesome, I had a perfect little baby belly once I started to show. I opted to do the triple screen- a blood test to check for chromosomal anomalies, and got back a result of 'increased risk'. Eh, my midwife assured me that there were a lot of people that got that result, and all was well. Because I was seeing a midwife, though, state law required me to follow up with a perinatologist, where my options were a thorough ultrasound to check for what they call 'soft markers', or an amnio. My husband and I felt that the amnio was too risky after the difficulty of getting pregnant, so we did the targeted ultrasound and went on our way. Well, we finally did the amnio at 30 weeks, when the risk of losing the baby was minimal, after three targeted ultrasounds that showed two markers of a possible problem.

The next day we found out that our baby had Down syndrome. We were devastated- I had PLANS. This was not my plan. I got a title of 'high risk', and couldn't stay with my midwife or birth center. I had to transfer to an OB/GYN at 32 weeks. I had to have a hospital birth, and because the baby was perpetually breech, we started talking about a c-section. It took me about two weeks. Two of the hardest weeks of my life, honestly. It was two weeks of me coming to terms with what I thought I was getting into, and what I was actually getting. It got better. I tried to wrap my head around our new circumstances by reading . I researched turning breech babies. I researched Down syndrome. I researched breastfeeding. I read and read and read. I remembered that the baby inside me, the one that I was so afraid of- was still the one that I had wished for and dreamed of for years and years. That just because things were going to be different didn't meant they were going to be bad.

The baby stayed breech, I had a c section. My husband followed the baby into the nursery to make sure that nothing was given to him by mouth, that no one gave him a pacifier until he was brought to me once I was out of recovery. I read the La Leche League's paper on breastfeeding babies with Down syndrome. It wasn't much to go on, but I knew it could be done. I put him to breast, and we fumbled. It was going, but it wasn't easy. We kept trying. He got to room-in with me from the start, so that was in our favor.

I called in the hospital's lactation consultant. With her help, we latched and relatched until he was on right. We stripped him down and woke him up because he kept falling asleep. We got a hospital grade pump on the scene to evert flat nipples. This was like work. I felt like I was doing it all wrong, but I hoped that if I kept at it, if I kept trying, maybe it would get better. I was going to do everything in my power to try until I couldn't do it anymore. We kept plugging along, and it was always an hours long process to get him awake, correctly latched, and eating. And then it was time to do it all over again. We got released from the hospital. At home, we kept up the wake up, latch-relatch, eat, fall asleep routine. I needed a hand to hold his head (in the dancer hold), and one to hold his body, and a third to hold my boob, which was bigger than the poor baby's head.

Fortunately, we had a pediatrician who is incredibly supportive of breastfeeding, and helped us, even while my son was not gaining his birthweight back very quickly. Instead of pushing us to supplement, he gave me some advise on positioning, and was available to help whenever I needed it.

We both learned how to do it better. As my son grew, he was able to manage better. As I got more comfortable with nursing, I was able to just go through the actions and not have to think about every step in detail. There was most definitely a learning curve- it wasn't just "open mouth, insert nipple", although we got there relatively quickly. By the time my son was four weeks old, we were doing just fine.

We did just fine straight through until he was about 16 months old, and I was pregnant with our second child. He weaned himself suddenly at that point.

It can be done. People told me not to get my hopes up, that babies with Down syndrome were unlikely to nurse. It's harder, maybe. But if we did it, others can, too.

(and with my second child I got my midwife assisted homebirth. My daughter nursed in her first minutes, and did it perfectly from the start. Easy as pie, without even a second thought)