Saturday, February 28, 2009

Brain damage due to birthing process, seizures are a result of it in this case!

The first time Timmy Fenlon almost died, he was younger than two years old.

It was a summer night in 1992, and the Fenlons, from Fayetteville, were visiting Timmy's grandmother at Amelia Island, Fla.

He was only 18 months old at the time, but Timmy enjoyed the trip and the kind of attention that is usually given to the very little and very special.

He was different than most children his age.

The usual baby milestones, such as rolling over, sitting up, walking and talking, had eluded him because of brain damage suffered during the birthing process.

The Fayetteville Observer reported that the Fenlons could only feel joy when they looked at their son. Everybody did. Even as a baby, there was something unique about the way Timmy expressed love for everyone he met.

Besides, they knew the rest would come eventually. Timmy was happy, and otherwise healthy.

But they weren't prepared for the seizure that would change their lives forever.

Around 8:30 that night, Eileen Fenlon, Timmy's mother, went to check on her son, not long after she'd put him to bed.

Walking into his room, Eileen smelled a strange, sickly smell. At first, she thought it was a dirty diaper. But when she got closer, she realized her son was covered in vomit and had stopped breathing.

Fenlon'smother-in-law, who is a nurse, began performing CPR, while Eileen called 911 and her husband, Tim, flagged down the ambulance.

The Fenlons didn't know it at the time, but Timmy was having the first of what would become hundreds of seizures. They were seizures that could last for days or weeks. And, eventually, they would leave Timmy with a brain so damaged he would become incapable of eating or walking by himself.

Now that he's 18, death is still a shadow in Timmy's room, hidden somewhere behind his favorite Barney DVDs, and buried underneath his laughter and hand-clapping.

His seizures are mostly under control with medication and medical devices, but his brain has been damaged beyond repair, and there's no certainty of anything in the Fenlon household.

Since that night in Florida, the family has learned to stay home when they can, and stay close to a hospital if they can't.

Timmy is unable to tell his parents when he feels bad, or when a seizure could be coming on. They only know that when his smile disappears, something is wrong.

Mostly, it's the uncertainty that gets them, but it also makes them grateful for each day they have with their son. They can only assume he will continue to have seizures, and they will leave him more helpless than he already is.

So when Eileen Fenlon heard about actor John Travolta's son, Jett, who died last month at 16 from a seizure disorder, she wanted to say something. She wanted people to know what it's like to live in the shadow of the next seizure, and that it's probably more common than many people realize.

According to the Centers for Disease Control, about 2.5 million Americans suffer from epilepsy, a medical condition that causes seizures. And more people suffer from seizure disorders not necessarily associated with epilepsy.

For some, a seizure — which Eileen Fenlon likens to an electrical storm in the brain — is a one-time occurrence, brought on by circumstances such as high fevers, a severe head injury or something that has cut off oxygen to the brain.

For others, it's a childhood problem that is eventually outgrown.

But for Timmy, it's a life sentence, according to his pediatric neurologist, Dr. David Jaffe.

Jaffe treats more than 1,000 children with seizure disorders at any given time, as well as many adults at his offices in Fayetteville and Cary.

"I have children that come to me who have multiple seizures per day, and some who only have four or five seizures a year," he said.

Some of the seizures last for seconds, he said, while others, like Timmy's, can last more than a week.

Jaffe said he doesn't know enough about Jett Travolta's seizure disorder to understand what went wrong — too little information was released on the subject.

Lawyers for John Travolta were quoted as saying the boy suffered from grand mal seizures, in which the victim loses consciousness and experiences violent muscle contractions.

The lawyers went on to say that Jett had been taking Depakote, a drug used for treating seizures, but that it had become ineffective, and he quit taking it.

Since going off the drug, Jett was said to have been experiencing about one serious seizure a week, according to the lawyers.

The story frightened Eileen, although Timmy's seizures seemed to have come under control through medication and a vagus nerve stimulator that was implanted in his chest in 2001.

The device, which looks similar to a pacemaker, is wired to the vagus nerve in the neck and sends electric signals to the brain that help prevent the electrical bursts that cause seizures.

Now, when Timmy has a seizure, it's usually stopped before it gets going, which has given the Fenlons peace of mind and a better quality of life, Jaffe said.

While the seizures have taken their toll, Timmy still loves to smile and give hugs to anyone who'll have one.

And despite what his family has been through, somehow it works, Jaffe said.

"I think a person and a society should be judged for how they treat people who are most vulnerable," he said. "Maybe knowing him, you can see how he feels about the people who love him and take care of him."


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