By: Dana Shelso
My daughter, Olive, was born with a congenital heart defect because of an extremely rare chromosome deletion that has never been reported before (17q11.2 micro-deletion).
Olive started visiting Gillette’s Feeding Clinic for therapy in 2011, at age 1 ½. We liked it so much that we also started physical therapy, occupational therapy, and most recently speech therapy at Gillette’s Minnetonka Clinic. Her therapists are Chrissy, Leah, and Megan. Olive has made great progress and development in her therapy areas!
This past summer, we noticed global delays and were referred to pediatric neurologist Nicole Williams, M.D. for evaluation. Dr. Williams recommended an MRI, which revealed that Olive has a condition called Chiari 1 malformation. Basically, this means the back of her brain, called the cerebellum, pushes into the upper spinal canal. We also found out that Olive has a tethered spinal cord, meaning her spinal cord is abnormally attached to the tissues around her spine.
At that point, it was time to determine the best treatment plan for Olive, which included surgery. In December 2012, Olive had two neurosurgeries at Gillette. Pediatric neurosurgeon Peter Kim, M.D., performed a Chiari decompression while Debbie Song, M.D., released her tethered cord. Soon after these surgeries, doctors also discovered Olive would need a third procedure—an emergency surgery to treat hydrocephalus, or excess fluid on the brain, with an implanted shunt.
Olive’s unexpected diagnosis of hydrocephalus was one of the most surreal, scary, and numbing moments I have experienced. I am so thankful Dr. Kim took the time to explain everything in detail and answer every question we had. It was quite a whirlwind evening but we knew that Olive was receiving great care.
Throughout Olive’s time at Gillette last December, we realized how truly awesome Gillette is — not that we didn’t think so before! All of the PICU staff were great. The nurses, nurse practitioners and surgeons treated us like we were part of the “Gillette family” and we were included in any and all treatment decisions that were made for Olive.
We truly love Gillette. Olive has come so far in her almost 4 years of life, and we owe much of this to the fabulous care she gets from her Gillette team!