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Featured Cherub of the Week: Riley Johnson

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Featured Cherub of the Week: Riley Johnson

Featured cherub of the week is Riley Johnson. Riley is the daughter of Andy and Alyssa Johnson. Andy is our Ohio CDH International Ambassador. This is what Andy and Alyssa had to share about Riley:

“Riley’s story begins when we found out at our 20 week ultrasound that something was wrong with the baby’s growth.  The doctors had detected a Diaphragmatic Hernia, delayed growth, and clubbed feet with Riley.  Through genetic testing we later found that Riley had a rare genetic disorder- Wolf-Hirschhorn Syndrome (4p-) and that was the root issue that had caused her CDH. 

We were referred to Cincinnati Children’s Hospital and their Pediatric Surgery team at the Fetal Care Center.  We cannot say enough positive things about the doctors, nurses, and medical staff at that place.  Riley was born August 23, 2016 and against the odds, those doctors, nurses, and support staff helped Riley survive an extremely high-risk pregnancy and make it through her precious first few hours.  As is the case with CDH, her lungs had not properly developed, and she had to immediately be intubated after she was born.  She was transferred to the NICU at Cincy Children’s and was set-up in a pod suited for ECMO and other intensive medical procedures.   

Riley had her first CDH repair almost a month after she was born.  These first two pictures are from the day of the first big surgery to repair her diaphragmatic hernia.  Despite Riley missing 90% of her diaphragm, the surgery went well and she was slowly on the road to recovery! 

Riley spent 88 days in the NICU (which was way shorter than we initially planned!).  Her life has truly been a miracle, and we constantly are praising and thanking God for bringing her as far as He has.  Life is not easy with Riley, as she constantly has appointments with doctors and therapists.  She has a complex medical history beyond the CDH but that has not stopped us from trying to do everything we can to enjoy life with her.  We’ve gone swimming, gone to baseball games, played with friends, and gone on adventures.  Also, this past August, Riley became a big sister to Sophia!  We are thankful to have two little girls in our house that we get to love and play with every day!  

We hope that Riley’s story is an encouragement to others.  We are always willing to listen or talk with people who have been down a similar path.  It’s a difficult road, but one that doesn’t need to be traveled alone!”

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