Keegan was a second grader and was looking forward to a partial school day and plans with a friend to go to the zoo when I got a call from his school nurse. She told me he was having a horrible headache, and by the time I got him home, it was apparent he was really sick. After a visit with his doctor, and then a neurologist, an MRI was done. It was the first time we heard the words ‘Chiari malformation’.
A Chiari malformation happens when part of the cerebellum herniates outside of the skull. We tried for a year to treat his symptoms as a migraine, but he just continued to feel worse. We finally asked for a second opinion at Riley where we met Dr. Jodi Smith. By that time, Keegan was coming home from school and falling asleep as soon as he put his backpack down until time to wake for school the next morning. He was choking on his food, and his hands and feet were going numb in addition to the rotten head pain/nausea. Dr. Smith found he had damage to his spinal cord, called a syrinx, from the Chiari malformation. He needed brain surgery, but little did we know this was the beginning of a long journey.
Keegan’s sister Kaylee had been having symptoms as well. After a scan, we learned she too had a Chiari malformation. The kids had brain surgery at Riley six months apart. Since then, they have had several other diagnosis including dysautonomia, ehlers-danlos syndrome, and intracranial hypertension. They both have had a few surgeries, and now have shunts.
There have been months and months of time that the kids don’t feel well enough to do much of anything, including hanging out with friends or going to school. It doesn’t get any easier to hand them to the staff as they head back down the hall for surgery, but we are always comforted to know we are handing them to Dr. Smith who will take excellent care of them! Dr. Smith has taken the time to get to know us, can talk baseball with Keegan and academics with Kaylee, and has answered emails and calls in the evenings and weekends without hesitation. When we recently needed a shunt x-ray for Kaylee, but Keegan was with us too, the radiology department staff greeted and teased Keegan by name.
From the fantastic nurses on 9W, to the child life specialists that distract the kids from painful recoveries or procedures, and the kind staff that clean come in to clean our room, we have felt cared for as a family at Riley. I wish no child needed Riley, but I am so thankful that Riley is there for those that do!