TJ's StoryJun 6, 2019
From Across the Globe: boy travels from Ireland for pioneering treatment at Children's Hospital of Michigan
One minute 13-month old Tj Cunningham of Dublin, Ireland was fine. The next minute, his head suddenly dropped and hit the tray on his highchair. His parents, Leah and Tony, had no idea what was wrong with their son.For months, doctors in Ireland tried a variety of medications to try and control Tj's seizures. But nothing seemed to work. Leah and Tony were losing hope
that anyone could help their son. But they kept on searching and learned about infantile spasms, one of the most devastating forms of pediatric epilepsy. The family's suspicions were confirmed by a neurologist in Ireland.
Leah searched the internet and came across the epilepsy expertise at Children's Hospital of Michigan.
With the help of the Detroit Medical Center's International Services Department, the 21-month-old boy and his family flew from Ireland to Detroit for an evaluation with epilepsy experts at the Children's Hospital of Michigan. Doctors concluded that Tj would be an excellent candidate for a craniotomy and resection of the brain tissue and epileptic foci causing the seizures. But time was not on the child's side. If left uncontrolled, the infantile spasms would undoubtedly cause permanent brain damage.
Tj was 22-months old when he and his family returned to the Children's Hospital of Michigan for the first of two surgeries. Sandeep Sood, MD, neurosurgeon, performed both surgical procedures. The first procedure, an intracranial EEG took about one hour with Dr. Sood carefully placing electrodes on the surface of the brain. In the coming days, the electrodes would help the epilepsy team pinpoint the exact locations of the boy's epileptic foci.
The data was analyzed by Eishi Asano, MD, Ph.D., medical director of Neurodiagnostics. at the Children's Hospital of Michigan. Dr. Asano found that most of the right hemisphere of the child's brain was involved in causing the seizures-including the right frontal temporal, parietal and occipital lobes. Only about 30 percent of the child's right parietal lobe was free of epileptic foci.
Less than a week after intracranial placement of the electrodes, the boy returned to the surgical suite for removal of the electrodes and surgical resection of brain tissue causing the seizures. Dr. Sood removed more than 70 percent of the right hemisphere of the brain in an aggressive procedure that took more than eight hours. With this type of surgery it's critically important to removed every part of the brain that is generating seizures or the infantile spasm syndrome may return.
The results of the procedure were immediately recognizable. Even as Tj slept in recovery, his parents were amazed to see he wasn't having seizures any more. After nearly 10 days in the hospital and additional time in physical rehabilitation at the Children's Hospital of Michigan, the family returned to Ireland.
Leah says since being treated at the Children's Hospital of Michigan he has done amazingly well and has come a long way in his recovery.
"Tj is doing fantastic at the moment, he is the happiest little boy ever with the funniest sense of humor and best personality going! We couldn't be prouder of him as he continues to amaze us each and every day. He is two and a half years post surgery now and infantile spasms free since then. Unfortunately he has had four very scary breakthrough tonic clonic seizures but these have been all fever related so far and we were kind of expecting them after his first one. He bounced back quickly each time. We were never given any guarantees with seizure freedom before surgery as Tj was a very complex case but we were guaranteed a quality of life and possibility of the odd seizure every now and again. That is success to us when he was having over 100 seizures everyday and lost all his skills. It was heartbreaking watching him deteriorate right in front of us for almost a year while we tried different medications. He has the best quality of life now, is in playschool, learning every day, talking, cycling, almost swimming, running, jumping, making friends and in general has almost caught up with his peers development wise. He has come so far since surgery at the Children's Hospital of Michigan in Detroit. Without that we would not have our happy, bubbly and amazing little boy showing us the world through his eyes! We are forever grateful for all the team who worked together on Tj at the Children's Hospital of Michigan," Leah says.