I have what you could call a “love/hate” relationship with Riley Hospital! This relationship began in May 2004 after my third child, Rosemary, was born. I say “hate” because no parent wants to hear there is a problem, or problems, with their bundle of joy. And even worse, that the problems with the baby are so severe that it is beyond what the local hospitals can handle. And the “love” part is out of gratitude that Riley exists, and is there to provide wonderful care when tragedy strikes. Thus began our journey with Riley.
I had a normal pregnancy, a normal ultrasound, and a normal delivery, so nothing could have prepared us for the shock that something was wrong. It wasn’t until after Rosemary was taken to the nursery for her bath and final measurements that suspicions began to grow. The nursing staff didn’t like Rosemary’s color or her breathing. After a brief stay at Memorial Hospital’s Newborn Intensive Care Unit, Rosemary was transported via ambulance to Riley Hospital in Indianapolis with an initial diagnosis of a frontal lobe encephalocele. In other words, they thought the plate in her skull didn’t fully fuse, and her brain was actually growing into her nose. This was the first of many daggers to my heart: she needed emergency brain surgery.
When the rest of the family arrived at Riley, Rosemary had already had a complete medical workup. That night, the neonatologist assigned to Rosemary came in with a notepad and began to rattle off a litany of problems they found. The good news was that she didn’t have a frontal lobe encephalocele, and thus did not require brain surgery, but the bad news was that she had numerous other problems. There was a problem with one of her eyes, her heart, her kidneys, her spinal cord, her nasal passages, her swallow reflex, her muscle tone, and even her brain. This meant a whole team of specialists was needed to follow Rosemary: a neonatologist; a developmental pediatrician; an ophthalmologist; a urologist; a surgeon; a geneticist; and an ear nose and throat doctor. One of the silver linings of having all these problems was that at least all the doctors were under one roof at Riley, where they could coordinate that care with one another.
As Rosemary grew, she thrived and exceeded many of the expectations we were given. When she was an infant, they couldn’t guarantee us she’d ever walk, talk, or be able to eat normally. I am thrilled to report she does all three splendidly. She still has many challenges, and she will always be dependent on us during her lifetime, but we’ve come to realize that’s just God’s plan. Eleven years ago that would have sounded like such a burden, but now I consider it a great blessing to be able to care for her as long as she or I will live.
Is raising a child like Rosemary tough? Yes, absolutely. Is raising any child tough? Yes, absolutely. A few years ago Hillary Clinton wrote a book called, “It Takes a Village” referring to raising children. Riley Hospital for Children became, and still is, a major part of my family’s “village.” My family and I will be forever grateful to Riley.
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