A delicate and dangerous surgery brings new hope to a baby boy with a rare and life-threatening disease. Contact 13 has been following his struggle since May. Now, we see how the family is literally moving out of the darkness and into the light.
The last time we saw Baby Carter, he had to have all the lights down low. No direct sunlight. A life led almost exclusively indoors.
"It was so hard to keep him just confined in the house all the time," says Carter's mom Shai.
Carter suffers from a rare genetic skin disorder called Lamellar Ichthyosis, affecting less than one percent of our population.
His skin is covered in scales--leaving him prone to infection, dehydration and respiratory problems. Skin so dry and tight he couldn't fully close his eyes.
"So you can imagine walking around and never being able to blink," says Dr. Bruce Snyder an ophthalmologist with Mednax Pediatrix medical group. He says carter's eyelids rotated out.
"The function of the lids could determine whether or not someone could go blind or not go blind," says Dr. Snyder. "And we can go as far out as we need go to find somebody who has a level of expertise or who has the confidence enough to take on a situation like this."
For Carter's family, that meant traveling to the Moran Eye Center in Utah for a delicate and specialized surgery on his eyelids.
"Now it's actually like he's got a shot at having a childhood," says Shai.
Thanks to the operation, at 10 months, Carter can finally explore the world outside the walls of his home.
"And not have to worry about getting cornea damage. That's not something that kids should have to worry about," says Shai.
Being able to close his eyes has opened up a whole new world.
"He's a lot more excited about things now," says Shai. "Lot more playful for sure."
But it hasn't been easy. Carter's eyes were bruised and severely swollen after the operation and he was in a lot of pain.
"It was just a lot worse than they told us to anticipate," Shai explains. "So it got a lot scarier and he had some bleeding from his incision because his skin is so tight."
On top of that, Carter got hand, foot and mouth disease from the hospital, but he's recovering, adjusting and doing much better now.
"He's building his character," say Carter's dad Zach.
After our first story about Carter, Shai says another world opened up.
"I've been getting a lot of messages to his Loving Carter page about other parents who don't even know what their kid's diagnosis is. Or they don't know what to do personally."
Shai initially reached out to Contact 13 for help and now she's the one helping other families with ichthyosis... sharing her experience, strength and hope.
With no certified pediatric dermatologists in Nevada, Shai and Zach resorted to trial and error in their dogged fight to keep Carter comfortable with frequent oatmeal baths and coconut oil from head to toe.
"We struggled to find these things that work for him and turns out that, these parents don't have to struggle to find that answer because we've got that answer."
As for carter's eyes.."Chances of long-term success are guarded," says Dr. Snyder. Because Ichthyosis is progressive and constant, he may need more surgeries later in life.
But for now, "Big relief. Big relief!" says Shai.
He can literally see the light and begin climbing out of the darkness he's been held in by his disorder.
"Being able to do things other kids can do and it's not as much of a disability now."
