Anna’s Story

(Anna’s mother): Our journey began with Stormont Vail Hospital when Anna was 3 weeks old, and she was admitted by her doctor for low oxygen and high heart rate.  While we were at the hospital, they ran multiple tests which showed Anna had a heart defect.  During this time Anna’s genetic testing came back which showed she had a Chromosome 18p deletion of the short arm.  The hospitalist, the child life specialist and a few nurses came in to tell us the news and told us we would be in this together. Research on Chromosome 18p deletion of the short arm entailed there would be broad spectrum of diagnosis for Anna. 

The Stormont Vail Hospital pediatric staff members have always been reassuring and like family for us throughout the years.  Anna has been hospitalized over 30 times throughout her lifetime at Stormont Vail Hospital for her heart, UTIs and multiple viruses that Anna has a hard time fighting on her own.  The Hospitalists at the hospital know exactly how to treat Anna and get her back to health which has saved us countless trips out of town to Children’s Mercy. 

Dr. Schumacher is Anna’s pediatrician who she regularly sees when she is sick and also sees her quarterly.  Dr. Schumacher coordinates her care with multiple doctors at Stormont and Children’s Mercy.  Dr. Schumacher has also coordinated a health plan with Anna’s school to things to look for if Anna becomes ill.  Anna has an IEP as well thru 501 with her health care plan and different school therapist (ie physical, speech, occupational, vision and adaptive PE. 

Anna has developmental delays, is nonverbal, with dystonia, hypotonia, stage 1 chronic kidney disease, vsd repair, tricuspid value moderate leakage, cvi and low immune system. 

While Anna has health challenges ahead, we are not alone in this, as together we all celebrate her incredible resiliency to face that next challenge with an adorable smile and incredible strength.