Ava Leigh LaBelle is one of two Marion County, Fla., residents who received a rare and life giving five-organ transplant last year at a Miami medical complex.
Ava, 3, underwent more than eight hours of transplant surgery Aug. 28 at Holtz Children’s Hospital at the University of Miami/Jackson Memorial Medical Center to replace her stomach, liver, pancreas and large and small intestines.
The transplant, in collaboration with the Miami Transplant Institute, came after years of tests and use of two types of medical access lines to provide her body needed nutrition, which led to at least 20 infections as Ava still suffered “failure to thrive,” according to her family.
Hope Hill, 30, of Ocala had a similar five-organ transplant on Dec. 4 and continues her recovery in Miami. Her mother, Melissa Hill, said this week she was “shocked” when she heard that a second person from Ocala was in Miami having such a procedure.
Brittany LaBelle, Ava’s mother, is living with her daughter at a Ronald McDonald House in the Miami area.
Ava’s dad, Matthew LaBelle, works “seven days a week” as a supervisor with One Stop Painting and Flooring in Ocala. He said his boss, Will Parker, has been supportive and allowed him to work extra hours.
The couple have four other children ages 4 to 13 and have been strapped with the costs related to the surgery and Brittany and Ava living in Miami.
“It’s an up and downhill battle,” Matthew LaBelle said. He said a family friend has been a great source of support and he didn’t think “we would’ve made it without her.”
Brittany LaBelle described some of the challenges of maintaining two family homes.
“Keeping up with a split family 300 miles apart is extremely difficult, but we make it work. We try to keep it as normal as possible for the kids’ comfort. It’s been a whirlwind as it is without me and Ava home for five months. Dad works overtime to provide for home and the essentials I need in Miami as well. We have had an outpouring of support from friends and community for gift cards and donations. It’s truly a blessing. That’s how we’ve been making it,” she said Thursday.
She said her aunt, Sandra Gaw, and longtime family friend Terry Vaughn “have played a huge role in helping care for the kids while Matthew works.”
Brittany and Matthew said this is longest they have been separated since they were married in August 2008.
According to Brittany, Ava was born Oct. 11, 2015, and within four weeks was “vomiting excessively and unable to make bowel movements.”
They made multiple trips to UF Health Shands Hospital in Gainesville, where it was found Ava had a “rare CYBB gene mutation.”
A referral to Children’s Hospital in Columbus, Ohio, in July 2017, for motility testing, indicated a diagnosis of chronic intestinal pseudo-obstruction.
Brittany said that after 20 months of tests “and prayers,” the family finally had answers about Ava’s condition.
The International Foundation for Gastrointestinal Disorders website defines motility as “the movements of the digestive system and the transit of the contents within it. When nerves or muscles in any portion of the digestive tract do not function in a strong, coordinated fashion, a person develops symptoms related to motility problems.”
Chronic intestinal pseudo-obstruction is one example of a gastrointestinal disorder in kids and teens.
One doctor said Ava would live to perhaps age 4 without a transplant, Brittany LaBelle noted in an email.
In July 2018, Ava became critically ill with an infection and soon was placed on the United Network for Organ Sharing list. Still dealing with infections, the family received a call about available organs and, after a battery of tests, Ava was flown to Miami for the Aug. 28 operation.
“My heart was absolutely broken because I couldn’t fathom the heartache our donor family was enduring,” Brittany wrote. “They made the selfless decision to bless our baby with the gift of life during their tragedy. We wouldn’t be here today without the blessing from them. They are our heroes. This is just the beginning of a new journey for Ava and our family.”
She said Ava has experienced some “mild rejection in her intestines,” which is being closely monitored.
A recent press release noted that the Miami Transplant Institute, an affiliation between Jackson Health System and the University of Miami Health System, was ranked the second largest transplant center in the United States by the Organ Procurement and Transplantation Network/United Network for Organ Sharing, the highest ranking the center has achieved since its founding in 1970. During 2018, MTI performed 681 transplants, trailing only behind UCLA.
According to Melissa Hill on Wednesday, Hope was put in the ICU on Christmas Day with a sepsis infection and was put back on life support but “she did fight the fight and won.” She was moved to the transplant floor at Jackson Memorial on Monday.
“Hope started eating a little bit and she’s having issues with pain and anxiety,” Hill said.
She expects Hope will be in the hospital up to three weeks and then the family must seek private accommodations in Miami and bear the expenses related to her continuing care.
Financial aid and social media accounts have been set up to help with expenses for both families:
For Ava — www.gofundme.com/2fdpuck; #Avastrong on Twitter.
For Hope — www.gofundme.com/mlzyi8; #hope4hope on Twitter