Sunday, July 09, 2006

I guess the doctors were wrong

Fragile fighter: Community pulls together to help ill infant

By Teri Greene
Montgomery Advertiser

Regan Gray holds her 4-month-old son, Cameron, at their home in Prattville. Cameron, born with alobar holoprosencephaly, has a cleft lip and a cleft palate. He also lacks a nasal bridge.
-- Mickey Welsh

He's just a baby, but there is one thing Cameron Gray of Prattville already knows: Life is a challenge.

What he has no way of knowing is just how far he's come in beating the odds, or just how many people -- family, friends, doctors, pharmacists and an entire community made up primarily of folks who have never even met him -- are pulling for him to make it.

Overwhelming odds

Cameron was born with alobar holoprosencephaly (HPE) -- when he was an embryo, his brain didn't separate into hemispheres. It's estimated to affect as many as one in 250 pregnancies, but only 3 percent of those pregnancies result in live births, reports the Carter Centers for Brain Research in Holoprosencephaly in Dallas.

His condition is apparent in his facial features. Like most children with alobar HPE, Cameron was born with a cleft lip -- separation of the two sides of the lip -- and a cleft palate -- an opening where the roof of the mouth usually has fused together; he also doesn't have a nasal bridge.

Regan Gray and her husband, Jason, learned of their first child's condition via ultrasound in her 30th week of pregnancy.

"Doctors told us the minute Cameron was born that he would probably seize until he died," Regan Gray said. "They said they would not be surprised if he only survived three days."

For a while, Cameron was having as many as 80 seizures a day. Each lasts a minute or so. His eyes twitch and his lip jumps, or his arms might stiffen as he shakes and kicks his feet. There's a lull, then it happens again.

If he has a seizure when he's asleep, he awakens with a screamlike cry and often has trouble drifting back to sleep.

He takes seizure medications four times a day, plus one dose is kept on hand just for emergencies -- and they happen often. Something as simple as an ear infection, a common cold -- even sunlight streaming in through a car window -- could lead to a seizure, and then possibly an intractable seizure, one that won't stop.

And because of his cleft problems, Cameron is at risk for deadly apnea attacks -- the sudden inability to breathe. He wears an apnea monitor all of the time.

At most, doctors told the Grays, Cameron would survive three months.

Friday, Cameron celebrated his 4-month birthday.

Tiny fighter

From the start, doctors said Cameron would most likely suffer from failure to thrive, the inability to put on weight, and he'd require a feeding tube. But after a short time of having nourishment pumped into him, Cameron took to the bottle, and he's up to 16 pounds.

He continues to defy. He's rolled over from his stomach to his back. He's alert to his surroundings and responsive to those around him. Just last week, he discovered his feet. They are fascinating.

"He's a very happy, sweet, loving baby," Regan Gray said. "He does so much every day that they never expected him to do."

Cameron isn't the first HPE baby that pediatric neurologist Jean-Ronel Corbier of Montgomery has treated, not even the first with the most severe form of the disease.

"I think he's doing the best that I've seen," said Corbier, who also pointed out that even with successes, thriving is a constant struggle for these children. "He's pulling through, making some developmental milestones. He's definitely a fighter."

About 20 to 30 percent of the children with the same type of birth defect Cameron has will live for at least one year, and survival to at least 11 years has been noted, according to a study published in the American Journal of Medical Genetics.

It's progress to celebrate, not just for the Grays and Cameron's doctors but for the people who've reached out to help a child they know little about, only that he is a very sick baby whose parents face high medical bills.

After Jason Gray told his fellow Millbrook police officers of Cameron's plight, two fundraisers were soon in the works.

"Public safety is not known as a very lucrative job. We knew they would need help," said Assistant Chief P.K. Johnson, who helped organize the events. "In law enforcement, we're all family."

The Grays have had to pay about $7,000 so far for medications, emergency room visits and other medical needs not covered by insurance.

A benefit motorcycle ride in May drew more than 100 bikers and raised $4,000. Last month, a softball benefit raised another $3,000.

But it wasn't just the local police force behind the effort. Johnson said the entire community and business sector of Millbrook banded together, as did law enforcement teams from several nearby areas.

Because of this financial boost, the Grays were able to start Cameron on a new anti-seizure medication, Keppra. Now, instead of 80-plus seizures a day, Cameron has 30 to 50 -- another milestone.

Complete devotion

Cameron's heavy-lidded, light blue eyes, soulful beyond his months, seldom stray from his mom.

Regan Gray quit her job as a respiratory therapist at Jackson Hospital to care for Cameron. They're together every moment. She even sleeps beside him so she can act quickly if he has a seizure or the apnea monitor goes off.

When Cameron isn't in her arms, Regan Gray is gathering information on his condition and seeking support via the Internet from other parents with HPE kids.

She's quick to acknowledge help from family, as well as 10-year-old twins Kayla and Courtney Rooney -- who've doted on Cameron all summer -- and their mom, Stephanie Rooney. Prattville Medicine Shoppe pharmacist James Jones has extended his hours for Cameron's parents when they've run low on Diastat, his emergency seizure medication. And there have been many calls to Cameron's pediatrician, Dr. Allen White, to Regan Gray's nursing colleagues at Jackson, to close friend and physician Marilyn Hepperle.

Regan Gray said she was told at the time of Cameron's diagnosis that there were "options" -- the main one being a late-term abortion.

"I told them I didn't want to discuss options," she said. "I mean, he's my child. Whatever his problems are, he was given to us for a reason, and we will love him."

Maybe that's why when this mom is with her child there's an unexpected peacefulness about her, a sense of calm in the face of what could be constant panic.

"You just take it one day at a time," she said. "He has his good days and his bad days, but every minute he's here is one minute more than they told me I'd have with him."

More info:
If you are interested in contributing money to help Cameron Gray, contact Assistant Chief P.K. Johnson or Sgt. Robby Johnson with the Millbrook Police Department at 334-285-6832.

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