Pictured: Dan, Gretchen, Bobby, Lizzy, Jimmy, Charlie, Jenny, Maggie, and Ricky
Dan’s brother, born in the 1950s, had Down syndrome. At just 18 years old he died of a heart defect common in children with Down syndrome. Today, this would be corrected with “routine” heart surgery.
Four summers ago, when I asked Dan what he thought about having another child, he responded, “I think we should adopt a baby with Down syndrome.” I understood.
Ricky, whom we adopted at birth, was found to have Down syndrome before he was born. His heart defect would need surgical correction, and his birthparents felt that someone else would be better able to provide the care he needed. His presence has been beyond rewarding to each person in our family.
We sought a child with Down syndrome and I relish opportunities to share the joys of Ricky. As one parent said, “receiving news that our child would have Down syndrome was our greatest fear, but now I wouldn’t trade her for anything in the world.”
I am nurse and always eager to learn, so when given the opportunity to see a genetic counselor in my second pregnancy I agreed. I was curious about the risks for Down syndrome and Cystic Fibrosis since they run in the family. The genetic counselor told me I was at virtually no risk of passing this on to my children. I didn’t have genetic testing because I knew I would just deal with whoever we were given.
Genetic counselors have an awesome responsibility to give information to parents. They are an important part of delivering news of a prenatal diagnosis and have a great opportunity to give “person-centered” information.
I never see Ricky’s issues as more burdensome than any of my other children. I truly feel honored to provide for him with his extra needs. Ricky is like the glue that draws us close and fills us with joy.
We are so in-love with Ricky that we’ve decided to do it all over again. This time, however, we are adopting a little boy, almost 3 years old, who lives in an orphanage in Ukraine.
Gene Story photos courtesy of Daniel Dunlap Photography