Monroeville family celebrates 2 healthy years after young daughter's liver transplant
It’s been two years since a Monroeville girl born with a rare genetic disorder received a new liver, and her family couldn’t be happier to be celebrating the anniversary.
Myka Joy Reeder, 3, has methylmalonic acidemia, meaning her body is unable to process certain amino acids found in protein because of a missing enzyme.
Myka was placed on the liver transplant waiting list in 2016 at age six months. On Jan. 7 2017, at just 23 months old, she was rushed to UPMC Children’s Hospital of Pittsburgh because a donor liver was ready for her.
According to data from the Organ Procurement and Transplantation Network, liver transplants for children at such a young age are uncommon. Of 8,082 people who received livers in 2017, just 2.7 percent were between ages 1 and 5. The most common age for liver transplantation is between 50 and 64 years old.
The new liver helps Myka’s body process methylmalonic acid, which becomes toxic at high levels. While the transplant is not a cure for Myka’s disease, a new liver is expected to reduce up to 70 percent of the associated side effects, including vomiting, developmental delay and long-term feeding problems.
“We’re thankful for a Christmas this year not spent in the hospital,” said Regan Reeder, Myka’s mother. “And we’re looking to send her to preschool next fall, which is mind-blowing. I thought she’d never be able to do that.”
Rick Lofgren, CEO of the nonprofit Children’s Organ Transplant Association or COTA, said it’s no surprise Myka is doing so well after her operation.
“Liver transplants are very successful,” he said, adding that patients with Myka’s disease who get a liver transplant have a five-year survival rate of 95 percent.
But the procedures are pricey.
“There’s a different price for every customer … but billings on average for a liver transplant are around $700,000,” Lofgren said. Other transplants, such as kidneys, lungs and hearts, can cost anywhere from $450,000 to $1.5 million, he said.
COTA, based in Bloomington, Ind., helps families like the Reeders through the financial hoops they are likely to face when going through a donor transplantation, such as trips to the hospital, food, lodging, parking — basically everything not covered by insurance, Lofgren said.
The Reeders, who have medical insurance that covered the transplant, were able to raise a little over $50,000 through COTA in four months once Myka was placed on the waiting list, Lofgren said.
That money, which Lofgren expects to last for up to 15 years of Myka’s life, will be used like a bank account which the Reeders can draw from to cover costs associated with Myka’s medical care, he said.
Aside from ongoing medical costs, Myka could face kidney issues as she ages because her disease causes a buildup of acids in the body that hits the kidneys and liver the hardest, Regan Reeder said.
So far, the liver and each kidney have held up, she said.
“She’s doing great – really great. Actually, she just had a tummy bug. Without the transplant, we would have ended up in the hospital,” she said.
“But we were able to manage it at home. It was incredible.”
Her daughter, who will turn 4 on Jan. 30, still has a regimen of five medications she takes to ensure her body does not reject the new liver and to manage the metabolic disease. Every medication is administered through a feeding tube four times a day, which will continue until Myka is old enough to take them on her own.
The list of five medications is a far cry from the 27 Myka took daily in the first few months following her liver transplant.
Regan Reeder said her faith in God has helped her family — including husband Richie, a pastor at Harvest Bible Chapel Pittsburgh East, and 7-year-old daughter, Alivia – navigate the turbulent times.
“This has made the presence of God in our lives so real. Multiple times, she should not have made it,” Regan Reeder said.
Simple things, such as watching Myka swinging at the park, are true gifts for the mother who once was told her daughter might never be able to walk.
“You definitely don’t take it for granted,” Regan Reeder said.
Dillon Carr is a Tribune-Review staff writer. You can contact Dillon at 412-871-2325, firstname.lastname@example.org or via Twitter @dillonswriting.