Riley’s Comforting Embrace: Kate’s NICU Story

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Alex Newby with his daughter, Kate.

No parent ever wants their child to be rushed to the hospital in an emergency situation. There is an instinct built into us that naturally makes us want to protect our children from any kind of harm. But when our newborn daughter needed more support than could be provided at her delivery hospital, my wife and I found ourselves in that exact situation.

Our daughter, Kate, was born with Noonan Syndrome, a rare genetic disorder that affects one in every 1,000 to 2,500 people. Noonan Syndrome presents itself through a variety of symptoms, including heart defects, developmental delays, and physical appearance abnormalities. Kate’s syndrome also caused complications with the pregnancy, which resulted in Kate being born about six weeks early. A combination of prematurity and cardiovascular challenges resulted in Kate’s blood pressure dropping dangerously low shortly after she was born. After trying everything available at the hospital where she was delivered, the decision was made to transport Kate to Riley Hospital for Children.

I was very overwhelmed the first day I came to Riley. But when I arrived at the NICU, I saw immediately that Kate was in absolutely the best place to help her get well. The first nurse I encountered from the NICU was very reassuring and confident as he gave me a tour and helped me make my way to Kate’s room. I then met a nurse practitioner and a doctor who explained to me everything that was being done to help my daughter. Just knowing and understanding that Kate was receiving the best care available was such a comfort. The Riley team does a fantastic job of making a difficult situation as smooth and easy as possible.

Over the next few days and weeks, my wife Lisa and I began to adjust to having our daughter in the hospital. We got to know the wonderful nurses who work in the NICU, and I think we have just about met everyone on that floor! One of the most remarkable things is that many of the Riley nurses have their own “Riley story” to tell. Many of their own children or relatives have been patients at Riley. We are surrounded by people who understand what we are going through. Although Kate’s syndrome is rare, it is not hindrance to her receiving the absolute best care available.

Kate has been at Riley for about two-and-a-half months now, and we are hoping that she will be well enough to go home in the next few weeks. Naturally, we are very eager to take our little girl home for the first time, but we also take comfort in knowing that as long as she is at Riley, she is getting the care and treatment that she needs.

Alex Newby

Alex Newby was born and raised in Indiana and now lives in the northeast side of Indianapolis. He and his wife Lisa, welcomed their first child, Kate, in 2016. In his spare time, Alex enjoys being outdoors, fishing and playing the guitar.

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