by Shannon Svikhart
I remember each time I've tried to thank someone for saving my daughter, Simone's, life. One time, after a critical surgery, she was not doing well. For a harrowing 16 hours, a PICU/anesthesia clinician was at her bedside. He constantly tweaked her ventilator settings and medications until finally, she was stabilized. Today, we marvel at her laughing and dancing around the kitchen. Without a doubt, we feel indebted to him and to all those whose talents, knowledge and persistence helped our daughter. Just saying "thanks" never feels like enough. My husband and I look forward to attending Family Advocacy Day in July to share her story and hope that it strikes a chord.
Simone is a joyful three year old whose medical issues have taken her on a 15- month journey through some of Baltimore’s finest children’s hospitals. Born two months early, she had her first two surgeries at University of Maryland Medical Center. Simone struggled with many infections and had difficulty being weaned from a ventilator. The NICU staff worked tirelessly to help Simone through those tough days and provided emotional support to us. Diagnosed with an array of different issues: hydrocephalus, GERD, craniosynostosis (early fusing of the skull), and chronic lung disease, it wasn’t until she was diagnosed with Cystic Fibrosis (CF) that she was transferred to the Johns Hopkins Children’s Center. The CF experts introduced special treatments such as chest physical therapy and CF medications to help clear the mucous from her lungs. She needed a gastric tube for feeding due to her failure to thrive and eventually a tracheostomy to provide a safer airway due to her fragile lung status.
Once more medically stable, Simone spent five months at Mt. Washington Pediatric Hospital in Baltimore. We knew “The Mount” was special from the moment we arrived on the beautiful grounds, easily found a parking spot, and were greeted at the door by the social worker and doctor! The staff soon became like extended family and the QUIET, therapeutic environment helped Simone thrive-- not just survive. Though early in her life they’d been told “she may not go home”, the happy day came after 13 months. However, this past January, Simone had her third skull surgery and suffered a stroke. Just a few months later, however, she regained almost full use of her right side. We credit her incredible therapists for helping her.
My family and I are forever in awe of the staff who’ve cared for our daughter "like their own." While still on a ventilator at night and being fed through the g-tube, she is breathing on her own all day and learning to eat by mouth. She now uses American Sign Language and often asks to Skype with her grandmother. She is fond of all the Sesame Street characters and loves to play with her cousins and friends. And, she's looking forward to Family Advocacy Day!