Posted on www.ktiv.com
It was a scary situation for the family of a Chicago Cubs pitcher. Ryan Dempster’s daughter was born with a rare genetic disease that kept her from swallowing.
As Ryan Dempster battled in Cubs spring training, his daughter was about to begin the fight of her life. On April 1st, Riley Elizabeth Dempster was born, joining dad, mom and big brother Brady. But soon after her birth, they learned something was very wrong. “Within 48 hours she started shaking. She wasn’t swallowing and they didn’t know why,” said Jenny Dempster. Riley was diagnosed with DiGeorge’s Syndrome, a rare genetic disorder with a potential of 186 symptoms. “Probably one of the more severe disorders in terms of being able to handle secretions, being able to suck and swallow,” said Dr. James Collins. “She was going to go through possibly some life-threatening surgeries,” said Ryan Dempster. At just five-weeks-old, Riley underwent a tracheotomy, forcing her to rely on a feeding tube. “She would turn blue and she’d stop breathing and doctors would come in and leave there just crying and so helpless,” said Jenny. “All secretions pools in her mouth and if we didn’t have a way to suction those out, she would have a chance of aspirating those into her lungs and causing pneumonia,” said Dr. Collins.
After spending the first 12 weeks of her life in the hospital, Riley finally came home. They’re uncertain she’ll ever be able to swallow on her own, but they’re challenging her to try. “We have a saying in our house — is new year, no trach. So when she came home, we told her she’s got six months. And has to start swallowing,” said Jenny. “She’s not gonna laugh, cry or coo until she gets that trach out,” said Ryan. Regardless, Riley will deal with DiGeorge’s Syndrome in some capacity the rest of her life. DiGeorge’s is the most common genetic cause of congenital heart disease, next to Down Syndrome.
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