Asher’s Story
It started with a phone call. “Hi, this is your pediatrician’s office, can you go to VCU Children’s Hospital for a MRI at 1pm today?” At our 2 month check up our Pediatrician, Dr. Haugeto, noticed Asher’s head had grown slightly larger than the rest of his body. She mentioned he would need to get a follow up, asap.
“Sure we’ll take him in.” Then we looked at each other, we had our house closing that same day. But if the Doctor thought it was that important, so important she already made an appointment for us, then we must go. We headed to get a scan done. Asher was in great spirits — as he is most of the time when he is seeing new things — just smiling and playing with his hands. As he lay on the exam table, the nurse came in and said she found a Doctor free to come talk to us. She sounded causal about it. With the COVID-19 pandemic happening I thought that the Neurosurgeons must be just hanging out. But that was not the case. The Doctor, a big stately man, came in. He noticed my husband’s Iowa Hawkeye hoodie and connected with him right away.
The next thing he said changed our lives. “Let me show you Asher’s brain.” He pulled up the scan, he pointed out that the ventricles were too big and the aquaduct of Sylvius was tiny which wouldn’t allow for fluid to drain. He would need surgery.
Suddenly when I looked down at Asher he seemed so small. My tiny little human happy and content on a huge exam table.
The Doctor must of understood the shock, even with no words, he then asked “Asher, that’s a biblical name isn’t it?,” “Yes, we’re Christian” we said, “Would you mind if we pray together?” he replied. I can not tell you the overwhelming feeling I had at that moment. I wasn’t sure what to make of it. I was thankful but also fearful. Is it really going to be that bad? Yes, my gut told me. It’s only the beginning.
So as I sit here crying as I write this, the only thing I know I can take action on is to make a website to spread the word and hopefully make a difference in the advancement of this disorder.
Thank you friends, family and colleagues who have reached out in support. I hope I can use this website to inform you. And selfishly not have to repeat the details to everyone. I’m exhausted, so is my husband. Without his calming love I would be a complete mess.
With love and a hopeful heart.
💙Toni (& Kevin), Asher’s parents
Follow updates on Instagram, @ashersstory or go to updates page.