Diagnosis: Seizures
Age at Diagnosis: 2 months old
Current Age: 7 years old
Charlie Claire's story, as told by her mother, Kristin:
Charlie Claire’s story starts when she was 3 days old and started having seizures the day we were set to leave Virginia Beach General Hospital. She was transferred from the VBGH NICU to CHKD NICU almost immediately.
The CHKD team from inception was amazing beginning with the transport team who came to pick her up. Once we were settled at CHKD, Charlie Claire underwent a battery of tests as we were informed her seizures were coming from an area of her brain that did not develop properly in utero. The neurology team started Charlie Claire on medication, monitored her for a few days to assure she was responding to the medication and we were finally released to go home.
A couple months passed and we were back at CHKD for a routine checkup with the neurology team. We were under the impression that Charlie Claire had been seizure free during this time period, but during her EEG discovered she was actually having “silent” (no outward signs) seizures and having a significant amount of them. She was instantaneously admitted to the PICU and prescribed new medications. After she failed to improve trialing 3+ medications in the PICU the team met with us to further discuss Charlie Claire’s condition. Since Charlie Claire was not responding favorably to the medications she would need to have a surgical procedure to remove the area of her brain that did not form properly. Additionally, the team explained that they did not perform the surgery she required and made a recommendation to place us in the hands of a wonderful doctor and team at VCU Medical Center.
The key factor in a complicated surgery like Charlie Claire’s is the timing. The surgery is best completed at a young age so that other areas of the brain can form and develop to make up for the portion of the brain that has been removed. We credit a lot of Charlie Claire’s success to CHKD and their ability to identify and recognize what was occurring with Charlie Claire. They were then able to assure the best care in order to provide an optimal outcome.
The above link will take you to our CrowdRise site. To donate in honor of Charlie Claire, please write Charlie Claire or Mile 19 in the comments section of your donation.