When Michael “Mick” Devlin was born in 1987, his parents were sure of two things: They loved him, and they would cherish every minute they had together because no one knew how many they had left.
Mick was born with ornithine transcarbamylase (OTC) deficiency, a genetic disorder that disrupts the liver’s ability to break down protein and eventually leads to a toxic build up of ammonia in the blood. It’s a very serious condition, and when Mick was born there weren’t many sustainable treatment options for OTC deficiency. Many children with the disease died.
Needless to say, when Mick’s parents Cathy and Michael held their newborn son and learned about his OTC deficiency, they were terrified. And while they didn’t know it at the time, their son would soon be one of the first children in New England to receive a successful liver transplant—a surgery that would eventually save his life, and the lives of thousands of children to follow.
A sad but familiar story
Unfortunately, Mick wasn’t Cathy and Michael’s first child born with OTC deficiency. They had had a son a year before who was born with the disease, but doctors couldn’t identify it in time to provide treatment. He passed away at just a few weeks old.
When Cathy became pregnant with Mick, she and Michael arranged it so their second child would be delivered at Brigham and Women’s Hospital, which has direct access to Boston Children’s Hospital. This way, if Mick was also born with the gene abnormality or mutation that causes OTC deficiency, he could quickly be seen by to pediatric doctors that knew how to treat it.
Within minutes of taking his first breath a blood test showed that Mick had also been born with OTC deficiency. He was rushed to Boston Children’s where pediatric metabolic disease and liver specialists were waiting to stabilize him with a specialized diet and medications.
“After everything we had already been through with OTC deficiency, we were devastated when we first got Mick’s diagnosis,” Cathy says. “But thankfully, this time we knew about it right away and could begin treatment early. The team at Boston Children’s had him on medication and monitored his food intake from the beginning, which gave him a better shot at life.”
And while everyone was thankful Mick was alive, his first few months of life were hard. Doctors were constantly having to adjust and readjust his medication regimen, and even then there were plenty of emergency trips to Boston Children’s when he was vomiting, feeling overly tired or refusing to eat.
“We were in and out of the hospital a lot for those first 18 months,” Cathy remembers. “We practically lived there.”
In need of a better solution
As the weeks went on, Mick’s symptoms got worse. In addition to his failing health doctors also worried about how his OTC deficiency would affect his mental development during such a critical time in his life. (Too much ammonia in the blood when a child is young is linked to severe developmental delay and intellectual disability.) After much consideration, Mick’s Boston Children’s doctors approached his parents with a bold idea: new advances in medications had recently made liver transplants in infants possible, but they were still considered new and experimental at the time. Still, given the prognosis of Mick’s disease, the doctors believed his best chance at a long and healthy life was a liver transplant, no matter how new the procedure was.
“At the time you could count the number of kids who had liver transplants on your fingers, and even fewer of them were babies, so naturally we were very anxious about the decision,” Cathy says. “There was so little information available about how these kids fared over time, and there was almost no one we could talk to who had been through the experience. But we trusted his care team at Boston Children’s, and knew they wanted what was best for him, so we agreed.”
Mick’s name was added to the organ waiting list, but finding a liver small enough for his infant body was difficult. It took nearly a year, but on the eve of Cathy’s birthday she received the call her family had waited months to get—a liver was finally available for Mick.
“When we got the call Michael was working a double shift at the plant and wasn’t able to get my phone calls. I needed to call the police to go get him so he could drive us to Boston Children’s in time,” Cathy remembers. “It was a very long night, but waking up the next morning knowing Mick had made it through surgery and was sleeping comfortably with his new liver was the best present I could have asked for.”
The future begins
Being one of the first (and smallest) children to receive a liver at Boston Children’s meant Mick’s care team would have to learn the best way to care for him as he recovered. They had to adjust and change his medications on more than one occasion, but by three months into recovery Mick was thriving for the first time in his young life.
“Having him home those first few months was so wonderful, I don’t know how to describe it,” Cathy says. “The three of us, living and sleeping under one roof, we felt like a full family for the first time.”
In time Mick worked with a speech therapist and a physical therapist to address a few of the developmental issues doctors had worried about. He quickly caught up with his peers and continued to excel. Today he’s working towards becoming a fulltime longshoreman at the same dockside plant that his father worked at 26 years ago, when he first learned that his son was about to receive his life-saving surgery. He’s also is an accomplished musician, playing drums in The Siracusa Project.
“Because I was so young when it happened I don’t think about my surgery much. Of course I take anti-rejection meds every day, but I’ve been doing that almost my whole life so it’s really not a big deal for me,” Mick says. “But if I stop to think about it, I guess it’s pretty cool that I was saved by something that was considered new or experimental at the time. If I hadn’t had the transplant I would’ve spent a lot more time in and out of the hospital, and my diet would be very restricted, which would make life a lot more difficult. I’m grateful that my doctors at Boston Children’s had the vision and skill to perform a liver transplant on me all those years ago.”
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