‘God’s going to give Kylie her miracle:’ Family seeks life-saving double lung transplant for girl

RICHMOND, Va. (WWBT) - Ashley Overfield and Jakob Haddix welcomed a gorgeous baby girl in November, only to realize quickly thereafter that something was very wrong.

“Call it a mother’s instinct,” Overfield said.

After nurses placed baby Kylie on Overfield’s chest after birth, she started turning purple.

That started a long journey of seeking answers.

“I’ve only held her a total of four times,” Overfield said sadly. “It was two times the first week she was born. And we were able to hold her for the first time in seven weeks last week,” Overfield said. “It was like Christmas. I’m going to cry just talking about it. It was good.”

At just more than two-months-old, Kylie has never known a day of life off a ventilator.

Every day of life for her is precious.

“Nobody could figure out what was wrong with her,” Overfield said. “She was like a medical mystery.”

After NICU stays at three different Richmond-area hospitals and weeks of testing, doctors diagnosed Kylie with a one-in-a-million disease called Surfactant B Deficiency.

“When she would exhale her breath, her lungs would collapse and they wouldn’t come back up,” Overfield said.

The recessive lung disorder leads to deadly respiratory failure within the first few months of life.

There is no cure or treatment. The only hope for Kylie’s survival is a double lung transplant.

“When you find out that your baby’s only going to live three to six months and there’s only, we’re told, a 30% chance of getting a lung transplant, that’s so scary,” Overfield said.

That procedure cannot be performed in the state of Virginia. And there are only a few states in the country where it is possible.

“We’re gonna do whatever we can to give Kylie a chance to live,” Overfield said. “If we have to give up everything, we’ll go to Texas. So that’s what we’re doing.”

Texas Children’s Hospital in Houston is Kylie’s best chance for a transplant.

“They said that their success rate is 96%,” Overfield said.

But there are no guarantees.

Overfield choked up thinking about what it means for Kylie to be able to receive her life-saving transplant.

“It’s so hard for me to pray that another mom loses her baby because that’s what has to happen for Kylie to get a pair of lungs,” Overfield said.

If Kylie’s condition declines at all, she will lose her spot on the list, so there is a lot on the line.

Another requirement for her to even be considered is that both parents be with her throughout the entire process.

That means they must quit their jobs, leave their 9-year-old daughter behind with her grandparents so she can finish school, and then move to Houston with their 1-year-old son.

“You have to be by her bedside every day, almost all day,” Overfield said. “It’s one of those things. I guess they have a lot to teach us. And it’s one of the things that can keep her off the list if we’re not there.”

It could still be many more months before Kylie gets a new set of lungs.

“Once we get down there, it’s two weeks of evaluations,” Overfield said. “They do psyche evaluations, everything, on us. Her clinical stuff. Then there’s a month where it goes in front of the medical board and they decide if they approve it, and then she gets on the list.”

“One thing that I’ve learned in this whole experience is that all those things that happen that you think are such a big deal everyday, none of that matters as long as your kids are in their beds and they’re healthy and your family’s together. At the end of the day, nothing else matters.”

“I want to be able to hold her without her being hooked up to machines and having to worry if they’re going to come out,” Overfield said. “I just want to be able to kiss her.”

“I do think that God works in ways that we can’t always understand,” Haddix said.

“I know that God’s going to give Kylie her miracle,” Overfield said. “I do, I believe that.”

With the loss of two incomes and mounting medical bills - plus the cost of setting up life in a new state - family and friends have created a GoFundMe for Kylie.

You can also track her progress through the Facebook group: Kylie’s Lung Transplant Journey.