A note from Sofia’s mom…
My name is Faith, I am an Executive Kitchen Manager for a corporate restaurant group and the proud mom of my three year old daughter Sofia. When I was pregnant with Sofia, I had what is considered a high risk pregnancy but the genetic testing was not covered by insurance; Sofia’s ultrasounds all looked great so there was no room for concern, but when she arrived she was having major unexplained health complications, even though the pregnancy was full term. The genetics department at The Children’s Hospital in Pittsburgh did a full workup and about a month later Sofia was diagnosed with a rare genetic condition called partial trisomy syndrome. To this day we have not found anyone with the exact same karyotype as Sofia, so managing her health has been reactive rather than proactive and we have no idea what to expect. She ended up having a 79 day NICU stay because of multiple diagnoses including failure to thrive, obstructive sleep apnea, and high risk for aspiration/severe reflux. She has had several operations including a feeding tube and open heart surgery. Because she was so medically fragile we were extremely concerned about our ability to care for her, and with us both being in the restaurant industry working long and odd hours we were unsure of how we could manage the care she needed. Through a social media mom’s group I found out about Child’s Way, the medical daycare facility at The Children’s Home. We did a tour and knew Child’s Way was the perfect place for Sofia. What we really love about Child’s Way is that it looks and feels like a “typical” daycare- the students there are not treated like patients and it does not feel like a medical setting, but there is a nurse in every classroom and all of the equipment needed including a 5 minute ambulance drive to Children’s Hospital for emergencies. Leaving Sofia at Child’s Way gave us peace of mind that we could go to work knowing she was in safe hands. When Sofia got close to being discharged from the NICU our concern was having the confidence in our ability to manage Sofia’s care. After all we had an entire team of medical professionals working around the clock and at home it was just the two of us with no medical background. Fortunately we were invited and eligible to stay at TCH Pediatric Specialty Hospital as a bridge between hospital and home to allow us to learn how to be not just parents, but qualified caregivers for Sofia. We stayed around two weeks learning how to administer her medications, manage her g tube feeds, how to fortify her milk, how to provide her with a safe place to sleep, how to administer infant CPR if needed, and how to react when her monitors alarmed. The best part about the Pediatric Specialty Hospital is that it feels more like a home setting and less like a hospital, but you have the peace of mind that you are not alone in caring for your child with special medical needs.
Meanwhile, Pediatric View at CHP came to do a bedside screening for Cortical Visual Impairment because of Sofia’s neurological health and we were made aware that Sofia was showing onset signs of CVI. Not only did I have no idea at the time what CVI was, her vision was one of the few things her medical team were not concerned about because she passed all of her eye exams in the NICU. Had Pediatric View not intervened, we would have never known that Sofia has CVI, she likely would have been misdiagnosed and I would not have been able to advocate to get Sofia the services she needed to set her up for success in using her vision. To this day I partner with Pediatric View for advice, assistance with advocacy, and best of all innovation in the field of CVI.
The Children’s Home has become our home away from home. To think of where we would be without this incredible organization feels like trying to imagine growing up without your own family. I am forever grateful for the connections we have made, the services Sofia has thrived from receiving, and the impact The Children’s Home makes each and every day.
Love, Faith