Five years ago, Julissa Cerda brought her infant daughter from the Rio Grande Valley in Texas to the Miami Transplant Institute so that surgeons could save the girl’s life from a rare and fatal congenital disease that would not allow her to digest food.
The multi-organ transplant surgery was a success. So when her second child also was diagnosed with Berdon syndrome last year, Cerda returned to Miami for surgeons with the University of Miami Health System to save the life of her infant son.
“It didn’t make it any easier to have to do it twice,” Cerda said Friday from the room at Jackson Memorial Hospital where her 1-year-old son, Liam, is recovering from the first eight-organ transplant performed in Florida.
“As a parent, it’s very hard,” she said. “But I stay strong for both of them. They’re the ones going through it. I’m just the support system.”
For this syndrome, organ transplant is the only cure.
Dr. Jennifer Garcia, UHealth pediatric gastroenterologist
About one in a million babies are born with Berdon syndrome, said Jennifer Garcia, a UHealth pediatric gastroenterologist who provides care for Liam and his older sister, Delilah, 6.
Most babies diagnosed with the rare disease, which afflicts the muscles of the bladder and bowels and makes it impossible to hold down food, do not live more than a year without treatment.
“For this syndrome,” Garcia said, “organ transplant is the only cure.”
In 2011, Delilah required seven new organs. Liam needed eight — a liver, stomach, large and small intestine, pancreas, two kidneys and a bladder.
The nine-hour surgery was performed on Feb. 23, about three weeks after Liam was first placed on an organ transplant waiting list, Cerda said.
For Cerda and her family, including Liam’s father, Jose Garza, the uncertainty of finding a matching donor — and the boy’s deteriorating health — made the wait nearly unbearable. The family traveled to Miami in January to prepare for transplant surgery.
According to the Department of Health and Human Services, one organ donor can save up to eight lives. April is National Donate Life Month.
“The doctors didn’t guarantee us he was going to make it because he was so ill,” Cerda said.
Prior to the surgery, Liam had been fed his entire life through an intravenous tube inserted into a large blood vessel in his chest. The liquid nutrition kept the boy alive, Garcia said, but it also led to complications, including liver failure.
Now, several weeks after the surgery, Liam has begun to eat solid foods, including carrots, peas and bananas.
“It’s like feeding a newborn,” Cerda said. “We’re teaching him how to eat, but he’s doing amazingly well.”
Liam, who has not left a hospital since he was born, celebrated his first birthday on Feb. 17 at Jackson Memorial.
Cerda said she expects to take Liam home in about four weeks following outpatient therapy in Miami.
“He needs to be medically stable,” she said, “and to make sure there’s no rejection in his organs.”
121,259 People waiting for an organ in the U.S.
Like his sister Delilah, Liam will require a lifetime of care, including anti-rejection medicine and regular consultations with a doctor, Garcia said.
But she added that his outlook for leading a normal life is good and getting better. She noted that a woman who received an intestinal transplant at Jackson Memorial in her teens recently gave birth to her second child.
“Outcomes from intestinal transplant have really improved over the last 20 years,” Garcia said. “The one-year survival is about 90 percent for pediatrics. The five-year survival rate is about 70 to 80 percent. And once you get past five years, it plateaus and stays at 70 to 80 percent.”