Hannah & Hailey Schilly
My Glennon story starts back when I was a little girl. I remember spending time there as a kid and that is why when I became a mom there wasn’t question as to where our kids would go for medical treatment. SSM Health Cardinal Glennon Children’s Hospital is a place that makes you feel safe as a patient and as a parent, even during the scariest moments of your life. Both of our girls, Hannah and Hailey are patients at Glennon.
Hailey has been a “frequent flyer” since she was 18-months-old. That is when she was diagnosed with a genetic neurological disorder called neurofibromatosis, (people in our world just call it NF). It causes tumors to grow on or around the body’s nerves or underneath the skin. Since Hailey’s diagnosis, she has had countless visits to the NF clinic, several MRI’s, and two surgeries to try and remove a tumor that is behind her eye. There is not much hope that we will ever remove the entire tumor due to its placement, but that does not ever get her down. She never complains about the pain, or that she has to take medicine every day - it’s just something she does. Taking medicine is all that she knows, it simply her normal. She has been doing it every day since she was a baby, to her it is just a way of life.
When you are fighting NF, it changes everything, if your child has a headache you fear that it could be not just a headache, but a new tumor. You are always waiting for a bomb to drop. That is where the angel in disguise comes in. Her name is Nurse Julie. She listens to you and calms your fears. She is what makes Glennon so special.
Our story continues with Hannah. Hannah was in a horrific accident almost three years ago. Hannah fell through a glass coffee table, the broken glass cut her back so severely that it went through her back and punctured her kidney. When she was airlifted to Glennon that night things did not look good for our then 6-year-old year little girl. She was losing a lot of blood and her vitals were pretty bad. That is when we met our hero in scrubs, Dr. Chatoorgoon, (Dr. Kavi). He took an almost impossible situation that could have had an unbearable outcome and saved our little girl's life. Hannah was in the hospital for over two weeks, underwent several surgical procedures, and overcame many obstacles along the way. She even overcame an aneurism that developed in her kidney. After she was discharged, we had to make frequent follow-up visits and still do even now.
When you have a child that is sick or that has suffered a severe trauma you always have a fear in the back of your mind “what if this is bad news, or what if this belly ache is something more?” The staff at Glennon helps make your fears disappear.
It’s because of them that our family is complete. For that we could never thank them enough.
- Heather Schilly