KYLARetrun to 22q Stories
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My husband texted me and said “go to cubs.com.”
It’s December – baseball is over for the season. Why?
“Ryan Dempster’s daughter has DiGeorge.”
My ears perked right up. Our daughter, Kyla, now age 7 was diagnosed shortly after birth with 22q11.2 deletion syndrome. When I was pregnant with her, the ultrasound showed a “shadow” in her heart. She had a VSD. A simple fix if that was all that was wrong. So, we prepared for the “simple” fix and prayed that everything would be okay. When Kyla was born on March 18, 2003, that “simple” fix turned into a life-changing event.
Kyla was born with a total of five heart defects. She has many other manifestations of the syndrome as well – she pretty much has no immune system, she’s a very petite little girl, she had a difficult time eating when she was very young, among other problems. She’s had a grand total of six open-heart surgeries, she takes five medications daily plus an additional prophylactic antibiotic on the weekends, as well as receiving weekly subcutaneous immune infusions. She’s had other surgeries as well – tubes, diaphragm plication, PEG tube placement followed three months later by G-tube insertion, a heart cath procedure to close the fenestration in her Fontan. There will be more to come, we know that.
Sometimes it’s really hard and we feel the stress and strain of having a child with special medical needs. However, the best advice we were ever given was from her immunologist/hematologist when she was discharged from the hos pital the first time at 7 weeks of age. He said to us “DO NOT treat Kyla as if she should be in a bubble.” We never have. Aside from certain accommodations that must be made, Kyla is an active, happy, and vibrant 7 year old – we go sledding in the winter, she goes to swimming lessons, participates in Daisy Scouts, and t-ball each summer. We try to go on family vacations each summer, she rides a bike, has a swingset, ice skates, loves going to the park, the pool, and the lake.
She’s encouraged to try anything and everything. We’ve always believed that, while we may have to make accommodations for her, she’s as “normal” as any other child and we will encourage her to do and be whatever she wants to be. While her future is uncertain, isn’t there some amount of uncertainty in all of our lives? We do our best to love her and to not let her issues over-shadow her younger brother. It does get difficult from time to time – but it’s all worth it!