Feighan: A milestone birthday is cause for celebration
A funny thing happens when you’ve already had one child born with a rare genetic condition. The doctors stop making predictions about the future when your second child is born with the same syndrome.
Thank goodness. By the time my daughter was born a decade ago, I didn’t want to hear about what she may or may not be able to do. I just wanted to bring her home.
Before she was born, my husband and I had already lived through unthinkable heartache. I was in my late 20s when we had our first child, an adorable little boy with strawberry blonde hair. Born two months early, doctors and nurses quickly took note of his “dysmorphic” features (I still hate that word). About a month after he was born, we got a letter in the mail — yes, the mail — from the hospital geneticist. He believed our son had a condition we’d never heard of called Cornelia de Lange Syndrome that can cause growth issues, developmental delay and a host of other problems.
After one setback after another, our son died. He was 3 months old. He never left the hospital.
Devastated, my husband and I waited two years before we tried to have another child. We did our research and met with a genetic counselor. We were told we had no higher chance of having another child with the same condition as my son as a person on the street. Yes, the recurrence rate was 1.5 percent but the vast majority of times the syndrome was caused by a random genetic error that happened at conception.
But the geneticist was wrong. We fell in the 1.5 percent.
A month before my daughter was born, the signs were clear. She was so small she wasn’t on the growth charts, there appeared to be an issue with her heart and early prenatal blood screens came back abnormal. The unthinkable was happening twice.
But after a month of bed rest to process what lay ahead — as much as that’s possible when you know you’re going to have a child with serious challenges — the day my sweet girl arrived wasn’t a sad one. I can still hear her tiny cry in the delivery room. Warm tears spilled down my cheeks. I knew the road ahead would be incredibly hard. I didn’t care. My daughter was here. I just wanted to take her home.
The first year was rough. There were endless visits to specialists, colic and acid reflux so severe my daughter would throw up out of her nose. She needed nightly oxygen because of obstructive sleep apnea. I took a leave of absence from work.
But we survived. My daughter smiled, sat independently at 13 months and walked on her own at nearly three. On her first day of school before her third birthday, she weighed less than 12 pounds, which isn’t uncommon for little ones with her condition.
Earlier this month, our little red-headed dynamo — the one who can’t speak but hands us boxes of Cinnamon Toast Crunch when she’s hungry — turned 10. The same little girl who doctors made no predictions about — good or bad — celebrated with classmates from her special needs school, family and all her favorite foods (Twinkies, graham crackers and tuna casserole). Her music teacher made a special appearance and sang songs. She beamed with happiness.
And I beamed with pride. Having a special needs child is a constant reminder to be present, to take stock of where you are at this moment. There are no guarantees. All we can do is celebrate what we have at this very moment. And be grateful. Yes, life is unfair but it’s awfully beautiful, too.
And it’s the smallest moments that stick out as the most grand: watching my daughter and her younger brother play together, snuggling on the couch, and hearing her amazing belly laugh.
And while my girl is bigger and much more feisty now, I can still look in her brown eyes and see her as a tiny newborn, wrapped in a blanket, sleeping in an isolette in the neonatal intensive care unit, her future unclear. I just wanted to take her home. And we did.