"I Truly Believe He Saved Our Son's Life Twice."
Our son Owen was born via a scheduled, repeat C-section on July 14th, 2014. While the nurses assessed Owen, they noticed he wasn’t breathing ideally so he went to the NICU for some monitoring. We soon learned that Owen had a cleft palate and would be transported to Riley Hospital for Children the next day. My world shattered. That night I was finally able to see him. He was perfect.
A neonatologist came to visit us and discuss the plan for Owen. We were told due to his cleft palate, small jaw, and breathing difficulties he was diagnosing him with Pierre Robin Sequence. PRS is a set of abnormalities affecting the head and face, consisting of a small lower jaw (micrognathia), a tongue that is placed further back than normal (glossoptosis), and an opening in the roof of the mouth (a cleft palate).
Once Owen arrived at Riley he had a handful of tests done. An ECHO of his heart showed some cardiac issues. At a week old he had a sleep study to determine if we needed a jaw surgery to improve his airway. The results came back the same day, only hours after the test ended (we were told it would take a couple of days.) Dr. Youssef Tahiri (our plastic surgeon) and Dr. Matt (our ENT) came to our room to deliver the results. Owen had severe obstructive apnea and went in for emergency jaw surgery the next morning.
During our NICU stay we also met with a genetic doctor, Dr. Weaver. He ordered chromosomal testing, which came back showing our Owen has Trisomy 9 Mosaicism. He is one of only a couple hundred known cases in the entire world.
We have dealt with many health problems since our first stay at Riley and every doctor, nurse, and staff member has made our stay as pleasurable as possible. When you’re told your child is a medical mystery, sometimes hope seems lost.
Dr. Tahiri, our plastic surgeon, stands out to us and will always have a place in my family’s heart. I truly believe he saved our son’s life twice. He truly cares about his job and the patients that he treats. He has made surprise visits to our room, and has called me after work hours and on weekends to give us test results that we were so desperately waiting for.
We are at Riley so often, we joke about it being our second home. I’m so thankful for those who make it feel like as much as a home as possible.
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