At two days old, a Norco, Louisiana infant was diagnosed with a rare condition that changed her and her parents' lives. But now technology offers hope for a normal life, and our camera was there when she took her first breath with a new machine.
It's the night after Christmas, and after nearly nine years, the Glore family is about to get the ultimate gift.
Their daughter Elise, the oldest of four girls, was born with a rare condition called Congenital Central Hypoventilation Syndrome. She can never go to sleep, nap or even doze for moment without the fear of dying. When awake, she's fine. But when asleep, her brain doesn't send the signal or impulse through the nerves to her breathing muscles. Her whole life, Elise has slept with a big ventilator pushing air into her lungs through a trach in her neck. Back in November, Elise was the first in the gulf coast region to have an Avery breathing pacemaker implanted under her skin. Through tiny laparoscopic incisions, Tulane surgeons implanted the devices to stimulate those nerves that move her diaphragm muscle. Now the external device that will transmit radio waves to stimulate her nerves, will be tested for the first time.
"They turned it on and she paced for nine hours, never looked back. She did amazingly well. Even the nurses, the doctors in ICU, we were all kind of like, 'Wow, that was so unexpected,'" said Samantha Glore, Elise's Mother.
A week later, we visited Elise at home. The third grader giggles when the device is first turned on.
"The machine (ventilator) just like gives you air in your stomach but this (pacemaker) gives you like freshly, new air, like automatic,: said Elise Glore.
When asked if the pacemaker feels better she said, "Yeah."
Her mom and dad are still nervous, constantly checking on her through the night. They still have to work out the kinks of how to make sure Elise doesn't knock off the connections when she curls up in her sleep.
"Nine years we've used a ventilator, nine years. Not to have that on, not to hear that cycling every night, every minute, is scary because the pacers are silent there is no noise," said Samantha.
One night during a power outage, they jumped into action, before remembering her breathing is now powered simply by a battery from the drug store, not electricity. The trach is still in her neck just for another month or two, just to make sure all is well. Elise can't wait to feel normal and getting the trach removed.
"Oh yes, I'm very looking forward." she said. "Because then I could swim. Then I could go to sleepovers. I wouldn't have a nurse and then I wouldn't have to ride the handicapped bus."
"If you would have told me nine years ago that we would have this technology available, never would have believed you, never. This is going to change her life. It's going to change her life for the better. It already has," said Samantha.
Breathing pacemakers have been used in people with spinal cord injuries. And now former Saints player Steve Gleason who has ALS, also has one.