Cubs pitcher Ryan Dempster’s infant daughter fights rare disease

CINCINNATI — Shortly after Ryan Dempster and his wife, Jenny, welcomed daughter Riley into the world on April 1, they learned their daughter suffers from DiGeorge syndrome, a rare congenital disease that prevents her from swallowing and digesting food.

Dempster has commuted to Childrens Memorial Hospital over the last seven weeks as his daughter undergoes procedures to keep her alive while she learns to swallow on her own. After initially asking the media to respect his privacy and not mention Riley’s health scare, Dempster decided to speak about the subject this weekend.

Tribune: What is DiGeorge syndrome?

Dempster: It’s a partial chromosome, a 22-Q deletion. There are a lot of variations of what she has, but the biggest thing with her is it affects her swallowing and secretions. She secretes a lot of fluid and can’t swallow. She had surgery [on May 11] to have the trachea put in and a feeding tube inserted, where they tie her stomach around her esophagus, so it stops stuff from coming back into her.

How has it affected you and your family?

Has it been rough? Yes, it’s been rougher than anything I can imagine. April was as miserable as I’ve ever been, being away from my wife, my son, and my daughter’s in a hospital and she’s never seen the outside of anything except an ambulance ride to and from the airport to get medically transported from Arizona to Childrens in Chicago.

I don’t take it out to the field. I don’t think it affects me. Maybe it does. Early on, when things would go bad, I’d get mad, punching Gatorade machines and snapping after I had a bad inning, because I wouldn’t try to show it or let the emotion out. It just started to eat away at me because for the first month of her life, I saw her for five days.

Did you consider asking for a leave of absence?

Not really. I’ve had unbelievable support from my teammates, from Lou [Piniella] and Larry [Rothschild] and Jim [Hendry] and everybody, [giving me] days off. On Monday she’ll have another procedure done. That’s kind of what we’ve been able to do — to have the procedure done on an off day.

What is next?

They inject her glands with something like Botox to stop the secretions. Right now she has to be suctioned, in 24-hour care. Even when we get her home, we’re going to have nurses 24 hours a day. But it’ll be nice to have her home to see her. You don’t have to go to the hospital, and it’ll be nice for Brady to have his sister home, hopefully by [June] 22.

What is the prognosis?

Really good. We were really lucky that our neonatologist in Arizona suggested right away through my wife’s preterm labor she had polyhydramnios [excess of amniotic fluid]. She retained a lot of fluid, and right away they did a DNA test and learned that it is what it is.

Some kids’ parents don’t find out till they’re 2 years old, and they’re making up for lost ground. Whereas with us, we can take the early steps to help do whatever we can for Riley’s future. By the time she is 2, hopefully she’s as normal as any other kid.

Thank God she’s ours. We’re fortunate, both financially and professionally, where we can make an impact on her life, and hopefully the lives of others, and that’s what we’re trying to do.”