Nicole Born-Crow started to suspect something was wrong with her newborn son Finnegan when he was just 3 months old. While he had grown normally up to that point, Nicole and her husband eventually began to notice that their son had started to prefer doing activities with one side of his body.
Concerned for their son’s health, the new parents consulted with Finnegan’s pediatrician, who referred them to a neurologist. Doctors conducted a number of tests to figure out what was happening, but they couldn’t pinpoint the root of the problem.
Then when the family was on vacation in New York City, things took a turn for the worst – Finnegan suffered a severe seizure.
“It was terrifying. We had no idea what it was,” Nicole Born-Crow, from Cleveland, Ohio, told FoxNews.com. “I had an idea of what epilepsy is. You think of violent shaking but not staring blankly into space. And he’d do that for a massive amount of time. He also got really shallow breath, and his eyes would start to tick to one side of his head.”
As soon as they left New York, Born-Crow and her husband took Finnegan to University Hospitals (UH) Case Medical Center in Cleveland, where he was immediately put under surveillance in the electroencephalography (EEG) unit in order to pinpoint the cause of his epilepsy. During his stay, hospital physicians also gave Finnegan anti-seizure medication to see if they could suppress his episodes, which were happening between three to five times a day
“For a while medication was working great, and at that point we thought it was under control,” Born-Crow said. “But then every couple of weeks a medication would stop working, so we’d up the dose or try something new.”
After the third medication failed to regulate Finnegan’s seizures, doctors informed Born-Crow that her son’s epilepsy was technically intractable – meaning there was a good chance that no medication would be able to control it. That meant the next viable option was brain surgery, something Born-Crow was reluctant to consider.
“I thought, ‘Are you crazy? I’m not going to cut into my baby’s brain just for seizures.’ I was in denial,” Born-Crow said. “…But they presented us with a plan… It was terrifying at first.”
Meanwhile, Finnegan’s seizures began to increase in frequency, occurring anywhere between 50 and 100 times a day. Born-Crow knew that something needed to be done.
Realizing that brain surgery was the only option for her son to live a normal life, Born-Crow agreed, and at just 1 year old, Finnegan would receive a brand new type of brain operation – one that had never before been performed in the United States.
Recurrent, spontaneous, unprovoked seizures occur in 1 to 2 percent of children in the United States. The traditional surgery for patients with this form of intractable epilepsy is a hemispherectomy – an operation that involves removing half of the brain.
But Dr. Jonathan Miller, director of functional and restorative neurosurgery at UH Case Medical Center, decided to try a new type of surgery, hoping to spare most of Finnegan’s brain and leave the majority of its tissue intact. Called temporoparietooccipital (TPO) disconnection, the procedure removes just enough of the brain to disconnect the portions affected by the electrical misfirings.
Prior to Finnegan’s operation, Miller and his team of neurologists had pinpointed the areas of the baby’s brain responsible for his seizures. During the operation, Miller put a couple of very fine cuts into the fibers of the brain’s white matter – bundles of nerve cells that connect areas of the brain together – to disrupt communication between the diseased brain regions and the healthy brain regions.
“We’re able to leave the diseased brain in place, but allow it to be separate from the healthy brain,” Miller told FoxNews.com. “Not only do you stop the seizures, but you’re also allowing the normal parts of the brain to develop normally and develop normal functions.”
Miller explained that during hemispherectomies, surgeons will often remove areas of healthy brain in addition to the diseased portions of the brain, to ensure that all unhealthy tissue has been removed. However, this sometimes results in the removal of crucial brain areas, ultimately limiting the patient’s cognitive capacity.
With TPO disconnection, most of the brain tissue remains, forcing the healthy portions of the brain to do extra work and take on the functions of the diseased brain. This is why it’s important for patients with epilepsy to have brain surgery as young as possible, Miller said, so that can start developing new neural pathways.
“You really want to capture these things while the brain is still developing,” Miller said. “As people get older, it really does impede the development of cognitive function, because you’re have seizures coming all the time…And an even bigger problem is that the brain can be passing functions on to the epilepsy portion of the brain, maybe where memory is formed or speech – even movement…So we, in effect, force the healthy parts to take over the areas that would have continued to produce epilepsy.”
A promising future
A year after his nearly 10-hour surgery, Finnegan is doing great, and Born-Crow said he hasn’t had a single seizure since the operation.
“He was amazing from the moment he woke up,” Born-Crow said. “I was terrified they’d disconnect something that’d change him from the baby that we had come to know. But he was totally normal; nothing was different except for the fact that he didn’t have seizures anymore.”
Both Born-Crow and Miller hope that Finnegan’s success story will help demonstrate the benefits of TPO disconnection to other epilepsy patients.
“There’s a large number of people in this country who suffer from epilepsy that may be curable, and people are afraid to undergo surgical procedures that could potentially have risk,” Miller said. “Hopefully by making (the surgery) less invasive, we make it a little more appealing and less dangerous so that we have better long term outcomes.”
Born-Crow also advised other parents with a newborn or child with epilepsy not to hesitate when it comes to the procedure.
“I would tell them to run towards a surgery like this,” Born-Crow said. “I know parents are scared of any surgery, but epilepsy is not curable, and surgery (may be) the only fix for it. If you think your child is a good candidate, it’s great because there are so many children who aren’t.”