Family seeking life-saving double lung transplant for their 2-month-old daughter

RICHMOND, Va. (WWBT/Gray News) - A couple says the only chance for their 2-month-old’s survival is a double lung transplant.

A Virginia couple welcomed their baby girl last November, only to realize quickly thereafter that something was very wrong.

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

Nurses placed baby Kylie on Overfield’s chest after birth, but the little girl started turning purple.

Ashley Overfield and Jakob Haddix say that started a long journey of seeking answers.

“I’ve only held her a total of four times,” Overfield said. “I’m going to cry just talking about it.”

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 stays at three different Richmond-area hospitals and weeks of testing, doctors diagnosed Kylie with a rare disease called surfactant protein 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, doctors said. There is no cure or treatment.

According to the couple, the only hope for Kylie’s survival is a double lung transplant.

“When you find out that your baby is only going to live 3 to 6 months and there’s a 30-percent chance of getting a lung transplant … it’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 going to 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 percent,” Overfield said.

But there are no guarantees.

Overfield gets 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,” she 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 Kylie to be considered for the transplant is that both parents must 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.”

Overfield added, “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.”

The couple has set up a GoFundMe to assist them through this difficult time.

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

They are also sharing their daughter’s progress through a Facebook group: Kylie’s Lung Transplant Journey.

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