As we approach the 1 year anniversary of our 2 year-old daughter surgery, my wife and I have been reflecting on the journey we’ve been on since Evelyn’s diagnosis of sagittal craniosynostosis back in March of 2015. We want to share with the doctors, nurses and leaders at Akron Children’s Hospital just how profoundly thankful we are for the care they’ve given to Evie and how thrilled we are to live in northeast Ohio, where we have access to this incredible institution.
During Evie’s 6-month wellness exam, we were referred to specialists to further evaluate the shape of her head. The concern was that her skull seemed narrow and her soft spots weren’t evident.
About a dozen appointments with neurologists, behavioral psychologists, neurosurgeons and plastics surgeons later, it was clear that Evie needed surgery to give her brain room to grow and provide her the best chance to thrive neurologically and behaviorally.
September 21, 2015, was the scariest day of our lives. It was the day our 11 month-old daughter was having her skull rebuilt.
We remember the small details from that day as if it were yesterday… waking up at 4:00 a.m. to get to the hospital by 5:30… playing a Flo Rida song over and over because it made Evie smile and kept Cate and I from losing it… and the countless nurses and doctors that would come by to speak with us about their own involvement in the procedure.
Finally, Evie was prepped and ready to go, and in walks Dr. Patel. He prepped us for a long day. He said we’d hear from his team throughout the day with updates, and then he looked at my wife and said, “I will not leave her side until you she’s back with you again.”
Despite the fear we both had – that our infant was about to endure 8 hours of anesthesia, a major surgery which exposed her brain, and the associated loss of blood and risk involved in this type of surgery – Dr. Patel’s words gave us some comfort.
The next 8 hours crawled, and I mean crawled… we would get an update every couple of hours from a nurse telling us that everything was going fine but how fine can THIS surgery be at any stage?? We were rebuilding my daughter’s skull.
When we saw her again, the procedure was complete. The surgery was a success and the technique and tools used (namely the cellsaver machine that Dr. Patel worked so hard to gain funding to acquire) prevented Evie from having to endure a blood transfusion.
So where are we now? On the 1 year anniversary of the surgery, Evelyn could not be doing any better. Our overachiever’s brain has room to grow and her future is bright.
One of our biggest fears was that our beautiful daughter was going to change somehow through this surgery, because she was the perfect little girl… healthy, sweet, laughed a lot, and seemed to be hitting and exceeding all of her growth targets.
It turns out our Evie is still herself, only that now, along with her battle scar on her head, she also wears a cape and is Super Girl. She’s the perfect almost 2 year old, she loves chasing her older brother and her dogs around the house, loves her Cabbage Patch babies, and loves to swim. Her future is bright.
I can’t even begin to describe how fortunate Cate and I are to live in northeast Ohio because we have access to the best doctors in the world. Akron Children’s Hospital is as good as it gets. It’s an organization full of amazing doctors, like Niyunth Patel, the craniofacial surgeon who led the surgery, and Tsulee Chen, the neurosurgeon who teamed with Dr. Patel on the procedure, who dedicate their lives towards these types of conditions and through their work unlock bright futures for the children they care for.
We could not have been more impressed by the ENTIRE Akron Children’s Hospital organization and will forever be grateful. Thank you from the bottom of our hearts.