Unforgettable Birth Day: Tillie's Riley Story
June 24, 2013
Topics: About Us
How do you prepare for the most difficult day of your life?
For me, it was with a ham and cheese omelet. My wife's water had broken and contractions had started so we were settled into the hospital awaiting the arrival of our daughter Tillie. Around 7:00 in the morning I went to have breakfast knowing that the actual delivery was still hours away. I ate my omelet next to the Samaritan helicopter crew all dressed up in their jumpsuits and joking with each other. I had no idea that in a couple of hours they would hold our beautiful daughter's future in their hands as they transported her nearly two hundred miles in a matter of minutes.
Everything went wrong at about 7:20 when Tillie's heart rate fell precipitously and nurses and doctors came running from what seemed like every corner of the hospital. Margo was whisked away to surgery and I waited, crying, praying, and agonizing for 20 minutes. The doctor who came out assured me that Margo was going to be fine. When I asked about Tillie I was told it was too soon to tell. There were a lot of serious faces and one nurse was crying. I later learned that Tillie's heart had slowed dramatically and this meant that her brain did not receive enough oxygen during labor.
They gave us the term Hypoxic Ischemic Encephalopathy. Possible outcomes: developmental delays, cerebral palsy... death.
The neonatal intensive care physician told us that Tillie's best hope was a cooling treatment where her body's core temperature would be lowered significantly for three days to give the brain time to heal. The nearest hospital that could do the treatment was Riley Hospital for Children in Indianapolis and the decision needed to be made immediately. It was terrifying, but we watched our tiny two-hour old daughter loaded in an incubator for transport on the Samaritan helicopter. I drove to Indianapolis immediately, knowing the helicopter would beat me there. On the way, I was called by Dr. Brenda Poindexter from the IU School of Medicine asking my permission to enroll Tillie in a study to determine the optimal cooling procedure for babies like Tillie. She explained that Tillie's care would not be compromised and that the research could help doctors make better decisions in the future about how long to cool babies and what temperature was best. I gave my consent. They continued to communicate with me throughout my 2.5 hour trip to Riley, explaining what they were going to do, asking me details about Tillie's birth, and obtaining more consents.
Because Tillie was in a research study group, her body temperature was even lower (about 3 degrees cooler) than the standard protocol. When I arrived at the hospital there were many people surrounding Tillie's little bed. Since she was in a research group, three researchers were in the NICU the first several hours with her. It was very comforting having them there, answering questions and calming our fears. Everyone was calm, kind, and helpful, but I'm afraid, I was none of those things. It was very hard to watch my daughter shiver on the cooling mat for three days straight, but I am convinced that the cooling treatment spared her from long-term effects. At the end of the cooling treatment Tillie had an MRI which showed very little brain damage.
Today, ten months later, Tillie is as busy as any other ten-month old. She crawls and stands up next to furniture, she babbles, and she is just an all around happy baby. The research team will follow up with Tillie's progress when she is two years old. I can't say enough about the doctors, nurses, researchers, and everyone else who supported us during the three weeks Tillie was in the neonatal intensive care unit at Riley. It was the hardest thing we have ever been through as a family, but we would not trade the outcome for the world.
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