Becoming Part of the Riley Hospital "Family"
June 11, 2015
Topics: Riley Kid Story
Growing up in Indiana, I was vaguely familiar with Riley Hospital for Children, but I never knew anyone who went there. It was a distant concept of specialized pediatric care that I never imagined would become so integral to our family’s life and our daughter’s well-being.
When Sarah was born a little over two years ago, my husband and I were met with photocopied documents derived from medical textbooks about Apert Syndrome – which was still a speculation until genetic blood testing confirmed the diagnosis. Very few people in our small community were versed in Apert Syndrome, so they offered little assistance in navigating the new world of special needs parenting.
Sarah’s pediatrician gave us the option of being referred to specialists at Riley Hospital, or anywhere else. Instantly I recalled the fondness with which people spoke about Riley and their staff. Though I had no basis for my decision, it was unanimous between my husband, Ben, and me that we would select Riley for Sarah’s unique needs.
Our first experience with any Riley team member was with the craniofacial anomalies department. Everyone from Pat (the Nurse Practitioner) to Jana (the Administrative Assistant) and Drs. Flores and Boaz were welcoming and offered an indeterminate amount of time answering our many questions and providing us with clear, proactive solutions. They were never forceful in guiding us toward particular options, but they did make clear what the implications of each choice would be, based on data and probability.
Because Apert Syndrome is so unique and has the potential to affect all systems in the body, we chose to continue Sarah’s surgical care for separating her fingers and toes through the Riley plastic surgery department. Our consultation with Dr. Sood and his team left us feeling confident and relieved that Sarah’s fingers would not only be functional but also fairly straight. Dr. Sood warned us that they would not be comparable to typical fingers, but we have been astounded at his accuracy in detail for separating almost all of her digits – with no complications. I have to credit his amazing staff, too, Nurse Angela and Megan, the Nurse Practitioner.
Even though Riley is a long drive for our family, it’s always well worth the trip. We know competent staff cares for Sarah’s unique needs and understands our family’s circumstances. They never hesitate to schedule multiple appointments or diagnostic tests in one day so that we don’t have to travel back and forth more than what is necessary. The surgical departments all coordinate with one another for comprehensive management for Sarah’s needs. It’s a relief to know that everyone is on the same page as we proceed with future surgeries and new complications that arise.
So I like to say that Riley Hospital is our “home away from home.” We’ve developed a rhythm and routine when we arrive, and the environment itself is almost like a blanket that envelops us in confidence while Sarah is in surgery or post-operative care. In the Apert community, many people rave about one or two physicians who specialize in Apert Syndrome (and similar syndromic forms of craniosynostosis), and they are willing to fly clear across the country to see them.
But our family is proud to be a Riley Hospital family. We know the staff, and they know us – by name. They not only manage Sarah’s medical needs, but they also get to know her as a person. Why would we decide to travel elsewhere when we have a gem of a children’s hospital practically in our own backyard?
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