Charlie's Story

Feb. 20, 2006 — -- Everyone loves a happy ending, but sometimes the details of the lives of babies in the NICU are never-ending.

For 3-month-old Charlie Ginter, the story is 111 days and counting, as he gets air transferred into his lungs through a tracheotomy tube into his throat.

Charlie's dad, Phil, is a carpenter and spends the nights with his son, who must wear soft cuffs on his little hands so he can't yank the tube out. Sometimes, though, Phil just wants to give him a break and gently uncuffs the restraints on his son's wrist.

Charlie's mom, Janet, does the day shifts. She's a teacher who hasn't taught a single class since before Thanksgiving and said for now there's "no end in sight" to her son's stay in the neonatal intensive care unit.

If you'd like to get in touch with Charlie Gitner's family go to: charliesangelscare.com.

"The truth is, Charlie may never be able to breathe on his own," said pediatric surgeon Mark Arkovitz. "The musculature we use for breathing, including the diaphragm, much of it's missing in Charlie who was born … with many of his internal organs twisted out of place under the skin."

His parents knew about his condition before he was born, and for the briefest moment, Janet says she and Phil considered terminating the pregnancy but it would have gone against their beliefs.

"I told them that he would probably live," said Arkovitz. "And the family elected to continue with the pregnancy."

"He felt like he had a good chance, like his head was growing good. Everything was going well," said Janet. "We felt we had to give it a shot."

And so they saved Charlie from death at birth, and in a series of amazing surgeries, relocated his misplaced organs closer to where they are supposed to be.

For now, the machine can do his breathing. But no one knows if there will come a day when Charlie can breathe on his own.

Saving Lives, But Complications Remain

It's one of the thorniest problems in the NICU -- kids like Charlie whose lives are saved but for whom other medical problems persist for years.

That's the reality for another little boy "Nightline" met at the hospital, Christopher Montgomery. He was born with underdeveloped lungs and spent time in NICU.

Now, two years later, he's still plagued with maladies. Muscles don't work properly, he has difficulty speaking and he has Beckwith-Weideman syndrome, a genetic overgrowth disorder that carries a risk of cancer.

For his parents, the constant medical attention has created a strain. The family's financial problems stem from Denise giving up her fulltime job to care for Christopher, so they are down to one paycheck for living costs although they do have health insurance.

Hope or False Optimism?

Charlie's dad stopped working before his son was born so he could renovate their home. His mother, Janet, has not worked in months and the insurance coverage from her job runs out at the end of this month. And the family has two other kids.

For Charlie's parents, one of the most exhausting aspects of the experience is the struggle between needing to believe Charlie will be OK and the knowledge that he's still at risk and may grow up with a serious disability.

Helping parents emotionally is a central concern in the NICU.

Irene Brusick has been a social worker at the NICU for 18 years and said, "nobody has the crystal ball to say, your child is going to have this kind of disability or that kind of disability."

"A lot of families don't have any choices to make. You know, you're making decisions with the future," said Brusick.

But hope is tricky because there's also false hope. And in the NICU hope can rise or fall on a doctor's word.

Doctors say there aren't always happy endings -- but they do tend to give hope the benefit of the doubt.

"Maybe 10 years ago, Charlie wouldn't have made it; now he has," said surgeon Mark Arkovitz. "Maybe five years from now somebody will discover some other treatment that will get Charlie off the ventilator or we can grow muscle cells and build him a new diaphragm. There's nothing to say with the progress that people are making in bio-medical research that we can't help Charlie … I have a lot of hope for Charlie."

And so does his mom, who keeps a journal that grows longer by the day in the hope that one day her son will read her entries.

At the family home, which was renovated before the Ginters knew Charlie would be sick, the one part left untouched is the fireplace with a picture of their son to come home to.Because it's hard to give up hope when you look into those real baby blues.

If you'd like to get in touch with Charlie Gitner's family go to: charliesangelscare.com.