In October, 2000, our lives changed dramatically when our seemingly healthy ten-month-old baby, Olivia, went into severe respiratory distress and was placed on life support at Penn State Children’s Hospital. What was thought to be a common cold turned out to be severe abnormalities of her trachea (windpipe). During her first ten days in the hospital, Olivia had three major surgeries to correct these abnormalities. She struggled to survive. She spent almost an entire year in the Pediatric Intensive Care Unit. The complexity of her condition required the services of many pediatric specialty doctors and multiple other surgeries.
When Olivia finally came home, our journey had not ended, but in many ways, just begun. Her medical needs remained extensive. Our family needed to learn to care for her in our home. In spite of home nursing care and the support of hospital staff, she required frequent trips back to the hospital for both routine and emergent care. Olivia spent every major holiday and a few too many birthdays in the hospital. These chaotic times were devastating to us as parents. In addition to confronting her critical illness, we were also confronted with a seemingly endless list of difficult decisions. We needed help adjusting to the fact that our lives had been changed forever.
Today, Olivia is an active 7-year-old girl who enjoys playing with her 6-year-old sister, Nevina and her Chocolate Labrador, Milton. She participates in therapeutic horseback riding and Challenger baseball. She attends a Life Skills class during the day and finds time to have weekly speech, physical and occupational therapy sessions. Olivia still requires follow-up in the cerebral palsy and feeding clinics at Penn State Children’s Hospital.
Having been through this difficult journey ourselves, our family is excited to see the Hummingbird Program offer support to other children with complex health needs and their families.