Birth Defects and Down Syndrome: Family Stories
Jake
When the ultrasound technician said, “Well, I see something that we need to discuss,” my husband squeezed my hand. This is what we’d been dreading. A congenital heart defect had shown up in the last several generations of his family, taking the lives of his uncle and brother. So when the technician said “it looks like you son has a cleft lip,“ we actually laughed out loud. This was clearly not the reaction she was used to. Once the initial relief wore off, the reality began to sink in. Our son was different. His condition wasn’t life threatening, but his young life would be filled with surgery and pain, therapy and frustration, bullying and exclusion. I grieved. And then I prepared to care for him. I should have prepared to care for myself too.
When Jake was born, the doctor held him up briefly, and then he and his twin sister were whisked away to the NICU. Everyone told me once I saw him I’d instantly fall in love with that tiny wide smile. But that’s not the way it happened. Jake was a difficult newborn who would arch, scream and fight. I began to panic before every feeding. I don’t know if it was because I didn’t get to hold them for the first two days, or because I wasn’t breastfeeding, or because of a million other factors, but I wouldn’t bond with my son for another two months. Whatever the real reason I had trouble bonding with Jake, I felt it must be because he was different, and I was a horrible person for not being able to love him. He deserved so much better than me. For the first few months, I lived in a haze of guilt, shame and anger. I felt I had to hide these awful feelings and pretend like I was the strong, loving mother I was supposed to be. There was so much help available for my son. I didn’t even know to look for help for myself.
Now, I have a fantastic support network of online forums, a local cleft parents’ group, and several close friends I’ve met through this experience. But it took me a long time to find them all. I had to work through the confusion of emotions on my own. To ease my feelings of guilt, I wrote and illustrated a picture book about a young bear who wonders if his mama bear loved him before his lip was repaired, or if she loves him now. I also started a doll clinic where we make dolls with clefts and repair scars. I’ve found peace in helping other parents through the difficult first year of the cleft journey. There is a clear treatment path for children born with clefts. Their needs are obvious to see. But the needs of their parents can get pushed aside as unimportant, often by the parents themselves. As I’ve told many struggling parents “to care for your child, you need to care for yourself first.” That’s easy to say, but difficult to do. It feels selfish. Over the last two years, I’ve had to learn how.
Learn more about birth defects:
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endorsement by CDC, HHS, or any of its employees of the sponsors or
the information and products presented on the site.
www.cdc.gov/birthdefects
www.cdc.gov/ncbddd/Spanish/birthdefects/
www.nbpdn.org
www.marchofdimes.com
www.nacersano.org/
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