Meridianville family speaks about son’s rare genetic disorder, liver transplant
HUNTSVILLE, Ala. (WHNT) — A family from Meridianville, a community just north of Huntsville, is hoping to return to the area in February.
The Cook family has spent the past several months in Pittsburgh, Pennsylvania, near the Children’s Hospital of Pittsburgh, where their son Liam is a patient.
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At a few days shy of 11 months old, Liam is doing well now, but his parents say it has been a long road to get where they are.
“We watched him almost die 7 times in one year, less than one year,” Molly Cook, Liam’s mom, said
Liam was born at Huntsville Hospital in March of 2023.
“The first 24 hours, he was a normal, healthy baby,” Molly said.
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His dad, Logan, agreed. “Signed off on by all the pediatricians, everyone said he looks great.”
“Then, going into his second day of life his body temp kind of went down and then his oxygen saturation,” Molly said. “They were like, ‘we’ll just be really careful’, take him down to the NICU, monitor him.”
She said after a visit down to the NICU her husband Logan Cook got worried.
“Logan went down [to the NICU] and he had coded and he was hooked up to all of these machines, so Logan came back to the room, and I had never seen him like that before,” Molly said. “I was just like, ‘they’re just being extra careful’, and he was like no somethings really wrong with him.”
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Shortly after, Liam was transported from Huntsville Hospital to Children’s of Alabama in Birmingham.
“It wasn’t until they transferred him to Children’s of Alabama in Birmingham that they told us what they thought it was, the OTC deficiency,” Molly said.
The Cooks said Liam was diagnosed with a rare genetic disorder called Ornithine Transcarbamylase Deficiency, or OTC for short.
“One of the NICU Nurse Practitioners suspected, she had seen something somewhere before and kind of like an educated guess they tested him for ammonia,” Logan said. “They saved his life” Molly added.
“A lot of the neonatal onset-OTC boys don’t make it past 48 hours” Molly said.
“The first 10 days in Birmingham they weren’t sure if he was going to pull through” Molly said. “It was touch and go” Logan added.
The Cooks referred to that time as “traumatic”.
“It was just a whirlwind, because we’re not in the medical community, I’m an accountant, he’s an engineer,” Molly said. “So it was like ‘what’s a metabolic disorder?’, like he needs a liver transplant, he can’t process protein, so it was a lot.”
The Children’s Hospital of Philadelphia, defines OTC as “a rare genetic condition that causes ammonia to build up in the blood. The condition – more commonly called OTC deficiency – is more common in boys than girls and tends to be more severe when symptoms emerge shortly after birth.”
“The genetic deficiency that he had, OTC, was wild it was rough,” Logan said,
Molly said they then found out that the only ‘cure’ was a liver transplant.
After waiting several months to find a donor, Liam had finally gotten big enough that he could have an adult donor.
That’s when Logan made the decision to save his own son’s life.
“I felt a huge relief, and I was also grateful that I was able to be a candidate, because not everybody can be a donor,” Logan said.
Logan donated a piece of the left lobe of his liver to Liam in surgery on November 28, 2023.
“Seeing that he’s doing so well, again relief and grateful at the same time because we’re here at the hospital and we see a lot of sick kids,” Logan said. “Seeing Liam doing well is wonderful.”
Logan said the recovery process for him was hard at first.
“I’m feeling fine now, we’re at nine weeks out,” Logan said about the surgery. “The first two weeks were really rough, and then it got better” he added.
Since the liver transplant, Liam no longer has the OTC deficiency.
Even though Liam is now recovering well, the family is not out of the woods yet.
“The first year after a transplant is the hardest,” Molly said
She said Liam’s labs are being monitored and he’s in multiple types of therapy including physical therapy, occupational therapy, and feeding therapy. Molly also said developmentally, Liam is only at about the six-month mark.
“It changed our perspective on life, and we’re just grateful that Liam is doing as well as he is,” Molly said.
Even with the hard journey that they’ve had, the Cooks say they cherish every day with Liam and look forward to the future.
“Now that he actually has a chance at growing up and getting to do all the things, even though transplant has its own complications, he actually gets to to be a kid and have a future,” Molly said.
The Cook family is working with the Children’s Organ Transplant Association (COTA) to raise awareness about his situation. They are also raising funds to help his life-long medical bills, and to potentially help other children diagnosed with OTC.
The Cooks say since Liam is doing so well, they believe they will soon be able to leave the Children’s Hospital of Pittsburgh and come home to Alabama.
Molly said they hope to be back in Meridianville by late February, just in time for Liam’s first birthday in March.
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