Two hours after Julianna was born, I was chomping at the bit, feeling irritable that they hadn’t brought her in for her first nursing, and trying to be patient. Then, of course, the doctor came in with the news of her chromosomal giftedness, and I don’t remember a whole lot after that.
I think we were already in our postpartum room before she came, and I had already received a visit from the stellar lactation consultant, who was guarded in her words. Kids with Down syndrome, she said, could probably nurse, eventually. But not to be discouraged if it didn’t work up front.
I was a trembling nervous wreck when my daughter came into the room at last, with backup in the form of nursery nurse, there to help with latch. Not at all what I had expected as a second-time nursing mother. But I drew my fragile baby into position, and Julianna latched on as if she was born to nurse. (Which, of course, she was.) The nurse’s jaw dropped, and she turned and dashed out of the room, returning two minutes later with the lactation consultant to crow and cheer. I felt a hard gleam of pride in myself and my daughter. Take that, Conventional Wisdom. Score One for my child. Teach you people to tell me what my child can and can’t do.
And then we went home, and it got a lot harder. My milk came in, and there was plenty of it, but she couldn’t stay latched, because she couldn’t breathe, thanks to the holes in her heart. She fell asleep almost as soon as she hit the breast. The girl slept all the time. Being well-experienced in plugged milk ducts, I was kind of a freak about the whole thing. It feels counterintuitive to work as hard as I did to keep her awake, to wake her over and over again. Dr. Sears says to aim for ten minutes of nursing—actual nursing—with kids with DS, and so I became a clock watcher. Often, I spent more time waking her up than I did nursing her.
Through sheer stubborn determination, I managed to do it–through a week of around-the-clock pumping when she was 5 1/2 weeks old and on a ventilator with RSV, through the weak oral muscles that meant that nursing = latching…over and over. I once told my mom that we latched a couple dozen times in a “10-minute” nursing session. “Ouch,” she said. I thought about what I was claiming and realized it sounded patently ridiculous. So I counted. I reached 18 latches in the first three minutes, and decided it was time to stop counting.
I share this because, despite the difficulties, we did it. She nursed exclusively until solid foods, and then she continued nursing until, at 16 months, she weaned completely.
It was really hard, but I don’t regret the experience one bit. For one thing, it gave me an intense confidence as a parent—more even than nursing Alex had given me. But more importantly, she needed all the health and developmental boost she could possibly get. That alone made it worthwhile. Nursing was a gift I could give her, one that she needed more than most.
I’d like to ask you all to share your stories now. I know there are those who have had beautiful experiences, as well as those who struggled more than we did, even some who have decided that the gift wasn’t worth the struggle. Please share your stories with us today.
Kathleen M. Basi 
Wow, what a beautiful and inspirational story!
Those who don’t even try to nurse their babies don’t know what they are missing!