'We've held our 2-month-old 4 times - she'll die without double lung transplant'

21 January 2024 , 12:58

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Kylie's mother sensed trouble as newborn turned purple, marking the start of a challenging journey (Image: FOX Carolina)

A couple is desperately seeking a double lung transplant for their 2-month-old daughter who was diagnosed with a rare and life-threatening lung disorder.

Ashley Overfield and Jakob Haddix's journey began last November when they welcomed their baby girl, Kylie, only to discover alarming issues shortly after birth. When nurses placed Kylie on her mother's chest, the newborn started turning purple. This marked the beginning of an arduous quest for answers.

After visits to three different Richmond, Virginia-area, hospitals and extensive testing, doctors identified Kylie with surfactant protein B deficiency, a rare lung disorder causing respiratory failure in the first few months of life. There is no cure or treatment for this condition, and the only hope for Kylie's survival is a double lung transplant.

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Ashley Overfield and Jakob Haddix share their harrowing journey of seeking answers for baby Kylie (FOX Carolina)

Ashley Overfield told WWBT: "I've only held her a total of four times. Kylie has never known a day of life off a ventilator. Every day is precious."

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The catch is that this life-saving transplant cannot be performed in Virginia, and only a few states offer the possibility. Determined to give Kylie a chance, the couple is prepared to relocate to Texas, specifically the Texas Children’s Hospital in Houston, where Kylie's best chance for a transplant lies.

Ashley said: "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. We're going to do whatever we can to give Kylie a chance to live."

Kylie, born last November, faces a daily struggle, hooked up to a ventilator (FOX Carolina)

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However, the path ahead is daunting. To be considered for the transplant, both parents must be with Kylie throughout the entire process. This means they'll have to quit their jobs, leaving their 9-year-old daughter with grandparents, and relocating with their 1-year-old son to Houston.

"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," Ashley said, emphasizing the critical importance of their constant presence by Kylie's bedside.

The family faces the challenge of quitting jobs and relocating for Kylie's treatment (FOX Carolina)

The couple anticipates it could be months before Kylie gets a new set of lungs, with a lengthy evaluation process, medical board approvals, and waiting list procedures at Texas Children’s Hospital.

Ashley said: "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."

Kylie's parents express the emotional toll and the need for constant bedside presence (FOX Carolina)

Facing substantial financial challenges, the couple has set up a GoFundMe to help them navigate through this difficult time. They also share updates on their daughter's progress through a Facebook group titled "Kylie’s Lung Transplant Journey."

"I do think that God works in ways that we can’t always understand," said Kylie's dad, Jakob, expressing hope and faith. "I know that God is going to give Kylie her miracle. I do believe that."

Vassia Barba