Couple shares story of “miracle” baby’s birth, rare genetic condition; how he’s doing 7 years later

Couple shares story of “miracle” baby’s birth, rare genetic condition; how he’s doing 7 years later

News Staff

Although seven years has passed, for Kaydi and Garrett Jones it’s still hard to talk about.

Kaydi, age 24 at the time, was 20 weeks pregnant with their first child and the young couple was excited for their ultrasound appointment. Her pregnancy had been relatively normal and they were about to find out if they were having a boy or girl.

“We got to see him alive and kicking just like any other baby,” Kaydi recalls. “We were excited to find out he was a boy and then afterwards, we met with the doctor and that’s when we first heard about congenital diaphragmatic hernia.”

Congenital diaphragmatic hernia – scary words and a condition the Jones had never heard of it.

But they soon learned one in every 2,000 infants has CDH, according to Columbia University Medical Center. It occurs when the diaphragm does not form properly and organs that should be in the stomach are pushed up into the chest.

“The diagnosis was really bad,” Garrett tells “The doctor basically said he has a very small chance to survive the birth and he talked about options of aborting pregnancy because quality of life might not be great.”

Kaydi remembers the chances of their child surviving were around ten percent, “but there was no way that we would give up on our baby.”

Kaydi and Garrett didn’t know what to expect but they did know they were going to fight for baby Gibson.

They were optimistic their child would be ok as long as he was inside Kaydi’s womb but the second he was born, anything could happen.

“I researched how much it would be to have a funeral just so I was prepared,” Kaydi says. “I felt like I needed to prepare for both sides of it.”

A month before the baby’s due date, the Jones moved from Pocatello to Salt Lake City so the child could be delivered at the University of Utah.

On March 30, 2011, Kaydi was induced and 23 hours later, at 6:30 p.m., baby Gibson Wheelock Jones entered the world surrounded by a team of surgeons.

“We didn’t know if he would be able to make a sound because, in order to make a sound, they have to take a breath,” Kaydi says. “We didn’t know if he would have any lung tissue but he made a sound. The phrase, ‘Your first breath took our breath away’ literally was that moment for us.”

Kaydi and Garrett didn’t see Gibson before he was rushed to the NICU then transported by a special team next door to Primary Children’s Hospital.

Gibson was hooked up to several devices – including an Extracorporeal Membrane Oxygenation (ECMO) machine which pumped and oxygenated his blood.

Once he was stable, the Jones’ met Gibson and the goal was to keep him as healthy as possible so doctors could perform surgery and move the organs in his chest to their proper places.

Family members arrived at the hospital and they were all wearing blue shirts that said “Congenital Diaphragmatic Hernia Day 3-31.”

“We didn’t know but Gibson was born on the day that his defect is nationally recognized,” Garrett says.

Four days passed and things were going well but then, in the middle of the night, the young couple received a devastating phone call.

“They called and said Gibson was crashing,” Kaydi recalls. “He was maxed out on the ventilator and maxed out on medications. (They said) you need to come up and prepare to say goodbye to your son.”

Kaydi and Garrett rushed to the hospital and saw their newborn son dying. They prayed and then asked the doctor on call, whom they had never met, to try and perform the operation that might save their boy.

“All medical procedures say don’t do the surgery,” Garrett says. “But we met with him and said, ‘Can you just try? Please. We won’t blame it on you. Just give him a chance. If you lose him on an operating table, at least you can say we tried.'”

The surgeon agreed and, as active members of the Church of Jesus Christ Latter-Day Saints, Garrett gave his son a priesthood blessing.

The surgery began and after several hours, the doctors arrived with good news: Gibson was fine and things were looking positive.

Now the little baby needed to rest and his parents anxiously waited the next few days and weeks as he recovered.

“After a month, we finally got to hold him and I think that was a huge game changer,” Garrett says.

On July 1, the doctor said Gibson could go home to Pocatello. He was still hooked to machines, taking several medications and needed frequent checkups, but he was improving.

“He was two years old when he finally got his feeding tube out,” Kaydi says.

Over the years, things have only gotten better. Gibson is preparing to celebrate his seventh birthday on March 31, Congenital Diaphragmatic Hernia Awareness day, and when you meet him, you’d never know he survived the unthinkable and continues to thrive.

“He rides bikes, plays soccer, he’s in first grade and he’s a very bright smart kid,” Garrett says. “There’s no learning disabilities or physical disabilities.”

Kaydi adds, “We didn’t know if he would survive the pregnancy. We didn’t know if he would survive the birth. We didn’t know if he would survive ECMO. We didn’t know if he would survive the surgery. He did. And it’s a miracle.”

TM & © 2018 Cable News Network, Inc., a Time Warner Company. All rights reserved.