Item Photo By OWEN O’ROURKE
Jonathan, left, and his dad Jeff Noon decorating a Christmas tree in their home in Lynn.
By GAYLA CAWLEY
LYNN — In 2013, at 12 years old, Jonathan Noon was getting progressively sicker and in dire need of a liver transplant — something that seemed out of reach due to his rare B Positive blood type.
Noon was born with a rare liver disease called biliary atresia, a congenital condition where children are born without bile ducts to drain the liver. Bile backs into the liver and causes damage, according to Dr. Heidi Yeh, surgical director for the Pediatric Transplant Surgery program at Massachusetts General Hospital. She is also the doctor who performed a successful liver transplant surgery on Noon in June 2013.
Noon was on the hospital’s deceased liver donor list for 10 years, said his mother, Erin Noon. He was also placed on a list in Pittsburgh as a last resort. Noon had been getting sicker since he was two years old and it was a just a matter of when a liver would be available for a transplant, his mother said.
Erin Noon said she first noticed something was wrong with her son when he was just six weeks old. At eight weeks, the doctors at MGH found out her son had biliary atresia. One week later, the baby underwent a 10-hour surgery, called a Kasai procedure, which made a new bile duct. However, it was only a temporary fix until he could get a new liver.
“We were told it would only last a year,” Erin Noon said. “We were prepared that he would need a liver transplant within a year.”
Instead, the procedure lasted 12 years, with Noon able to keep the liver with which he was born during that time period.
“He’s like a miracle or something,” his mother said.
Still, it wasn’t smooth sailing. Jonathan was in and out of the hospital during that time period.
By the time he turned 12, it became apparent that traditional liver donor route might not pan out. Noon was becoming very ill, and he had stopped growing.
However, there was another option. Jeff Noon, Jonathan’s father, got tested in January 2013 and found he was a perfect match for his son. Jeff Noon could become a living donor, and give over half his liver to his son.
Before he could donate, Jeff Noon said he had to lose 25 pounds, undergo psychiatric testing and have a CT scan and MRI. He said the family had explored the option of him possibly getting tested as a living donor when Jonathan was younger, but according to their health insurance carrier, the younger Noon wasn’t sick enough at that point for a transplant.
“Two and a half years into it, it’s probably one of the best things we could have done,” Jeff Noon said about the family transplant surgery. “In hindsight, I wish we could have done it sooner.”
Since the surgery, Jonathan Noon has grown six inches within the past year and has gained about 20 pounds.
“I’m jealous you got to give [Jonathan] life twice,” Erin Noon said to her husband, Jeff.
Yeh said the teen’s liver was pretty diseased by the time she met him when he 12 years old. A few years after the surgery, she said her patient is doing well, but will have to take anti-rejection medicine the rest of his life, as a donated liver will often develop low grade chronic rejection.
She said he could possibly need another liver transplant in 10 to 20 years, but “right now he’s doing great and I don’t see any signs that it will be needed.”
Yeh said biliary atresia is rare, but is the most common indication for liver transplant among children. She said she continues to see Noon regularly, as he gets regular lab testing for his liver function, and to make sure he’s not developing signs of failure. She said she will continue to treat Noon after he turns 18, as her program at MGH is a combined adult and pediatric center, and he will have to have the regular check-ins for the rest of his life.
Yeh said having Jeff Noon as a living donor sped up the transplant process, as the list for a donor organ in New England is very long. She said patients sometimes die waiting for an organ to become available. She said patient survival rate a year after liver transplant surgery, which she said is a pretty high risk surgery, is 90 to 95 percent.
“(Jonathan) is an amazing kid and he’s done very well,” Yeh said. “It’s impressive how much of a normal life he’s been able to keep on when he’s been chronically ill and has gone through this major surgery.”
Following surgery, Noon said he was in the hospital for another 2½ weeks, where he began his physical therapy, which he completed at home. He said it took him about a month and a half after surgery to start feeling better. Now, he said, he’s able to live normally, but just can’t participate in contact sports.
This past summer, Jonathan was able to take a family vacation, without any health restrictions for the first time. His mother said the vacation was a two-year surgery anniversary cruise.
“I used to not be able to travel,” Jonathan Noon said. “I got to go on a cruise to Bermuda. I really didn’t have to worry about anything.”
Jonathan, now a sophomore at KIPP Academy Lynn Collegiate High School, said he wants to center his career around the medical field as well. After surgery, he decided when he reaches 18, he wants to get his EMT license and maybe work on an ambulance.
He then wants to attend Salem State University and become a registered nurse. Upon graduation, he’s hoping to land a job at MGH, the hospital he’s grown up at.
Gayla Cawley can be reached at firstname.lastname@example.org