Information: www.forehadley.com.
Ryan Bush is a rabid golfer. Earlier this month, the Atlanta resident played his most important tournament — one in honor of his daughter, Hadley, who died at only six days old with a rare birth defect called congenital diaphragmatic hernia. The first annual “Fore Hadley Golf Classic” raised $72,000 for CDH research and support. Bush talked about the loss for him and his wife, Katie, and the tournament as a way to keep his daughter’s name alive and give her too-short life meaning.
Q: Tell us Hadley’s story.
A: We found out we were pregnant in Spring 2015 and everything was going smoothly. We went in for a routine 20-week checkup. Our obstetrician noticed something a little off and we went to see a neonatologist. Hadley was diagnosed with CDH. We had no idea what that even meant.
Q: What is CDH?
A: A birth defect that happens between 8 and 12 weeks of pregnancy. The diaphragm doesn't form or close totally, allowing internal organs normally housed in the abdomen to sneak up into the chest cavity. That inhibits lung development. Some cases are more serious than others. The doctors told us that when Hadley was born, she would need corrective surgery but they felt that she would survive. All of this was assuming a full-term birth.
Q: Hadley was pre-term?
A: I was in Boston for work and got a call from Katie that she had gone into labor. Hadley was born July 20 at 25 weeks and weighed 1 pound 7 ounces. There is supposedly no connection between CDH and premature labor. The doctors prepared us for the worst. I think to everyone's surprise, Hadley responded extremely well. She was in the neonatal intensive-care unit six days. Then we got a call that she not doing well. We were with her when she passed away, on July 26.
Q: Sounds like a total roller coaster.
A: That was terrible.
Q: How much is known about CDH?
A: Not a whole lot and it is not well known by the general population. The cause is completely unknown. The situation can be corrected only after the baby is here. CDH affects 1 in 2,500 babies worldwide and 1 in 1,600 in the U.S. There's about a 50 percent survival rate.
Q: How are you and Katie doing?
A: To have the rug pulled out from under you is extremely tough. People say the death of a child can tear families apart or bring them together. Thankfully, for us, it is the latter. We have a solid network of friends and family to lean on. Katie and I started going to a support group for parents who have lost a child and that has helped. It is still difficult.
Q: How did the tournament go?
A: It was the most bittersweet thing. Bitter in that we wished more than anything that we weren't in this place. Sweet in that it exceeded all of our expectations. We netted $72,000 — $62,000 donated to CHERUBS, a nonprofit dedicated to CDH. Ours qualifies as the single largest donation in the group's history. Children's Healthcare of Atlanta received $10,000.
Q: What do you hope the legacy is?
A: Katie and I sincerely hope and expect this tournament to touch the lives of other CDH families for years to come. We really want to work as hard as we can every day to make Hadley proud of us and know she'll always be loved as much as any of her future brothers and sisters.
About the Author
