Forced to undergo an organ transplant at only nine months old, Mattie Beacham faced a health battle that seemed insurmountable.
Her parents — Michael and Allison Beacham — watched as their baby fought for her life in a pediatric intensive care unit. They feared she wouldn’t survive the rare disease that was destroying her liver.
“She was in total organ failure,” said Michael Beacham, a restaurant executive who lives in Windermere. “She had 21 different pumps to keep her alive. There was a week of us watching our child bleed because she had no clotting capabilities. Her liver was dead. Everything imaginable that you could go through — surgeries nonstop, her coding.”
Nicknamed “Miracle Mattie,” she pulled through after a successful liver transplant and today is a smiley toddler approaching her third birthday. But Mattie lost all the fingers on her left hand and will face a lifetime of medical challenges as a result of her medical ordeal.
Now, the Beachams are locked in a legal fight with a medical group that provides clinical services at Orlando Health Winnie Palmer Hospital for Women and Babies. The parents argue that shortly after birth Mattie had an abnormal blood test that should have been a glaring red flag, but no one followed up on it.
Mattie Beacham underwent a liver transplant at only nine months old. The procedure was successful, but she faces a lifetime of medical problems.
In a lawsuit filed against Pediatrix Medical Group of Florida, the couple contends that had the test been flagged Mattie would have received treatment earlier with a higher chance of success, delaying the need for a liver transplant and sparing her much of the suffering she endured.
“The disease is unpreventable,” said Allison Walker Beacham, an anchor, reporter and host for Spectrum News 13, the Orlando Sentinel’s news partner. “This is preventable,” she said of what happened to her daughter. “That’s why we are in this fight.”
The couple is also in arbitration with Orlando Health, a process that allows medical negligence claims to be resolved outside of court, their lawyer Steven Maher said.
“We want to obtain justice for this little girl,” he said.
Orlando Health and Pediatrix Medical Group of Florida both declined to comment about Mattie’s treatment, citing the pending litigation.
The lawsuit focuses on a test conducted shortly after Mattie was born on Dec. 13, 2022.
On Mattie’s fourth day of life, clinicians working at Winnie Palmer Hospital performed a direct bilirubin test, and the results came back at 2.70 mg/dL, far above the reference range of zero to 0.20 mg/dL, according to the suit.
Despite this, the clinicians never told the Beachams about the test result, which came back about an hour-and-a-half after Mattie was discharged, the suit contends.
On day 63 of her life, Mattie was diagnosed with biliary atresia, a rare disease that affects newborns and causes bile to build up in the liver and damage it. A surgery, called the Kasai procedure, can help restore bile flow and prevent liver damage. It is not curative, but it can delay the need for a liver transplant until later in childhood and in some cases even adulthood.
The earlier the Kasai procedure is done, the more effective it may be, according to the National Institute of Diabetes and Digestive and Kidney Diseases. The suit contends the Kasai procedure has the best chance of success when performed within a baby’s first month of life. Mattie’s surgery, done on the 65th day of life, failed, according to the suit.
Mattie then spent nearly 185 days at AdventHealth for Children, where she underwent a liver transplant. Her parents said the care she received there was top-notch, but she arrived already very ill.
“By the time we got to AdventHealth, all the damage was done,” said Michael Beacham.
He said the delayed diagnosis meant the Kasai surgery needed to be done right away, giving the family no time to look for a skilled surgeon of their choosing.
“If we had known earlier, we would have had this child at one of the best hospitals for this,” said Beacham, who is president of California Pizza Kitchen. “To explain this disease in the simplest form: It is a timebomb disease.”
Because Orlando Health offered arbitration, the Beachams are limited in how much noneconomic damages they can collect with a cap of $250,000, said Maher, the family’s attorney. In the lawsuit against the pediatric medical group, they are seeking in excess of $50,000 for lost earnings, pain, suffering and disfigurement, among other claims.
Mattie’s prolonged medical battle, which required her to be kept alive on many machines, resulted in the loss of her fingers, her parents said. Beyond that, Mattie will face other health challenges, they said. She’ll need to be on immunosuppressant drugs for the rest of her life. Those drugs are not without serious side effects, including an increased risk of cancer and infection.
She’ll need another surgery to reconstruct her abdomen and potentially a hand transplant later in life, he parents said.
“She is the happiest kid, but she is going to have a lifetime of challenges that she shouldn’t have had,” Michael Beacham said. “It’s not fair.”
Allison Beacham said she hopes Mattie’s story will improve care for other babies born at Winnie Palmer Hospital. The couple is also advocating for more newborn screening requirements and guidelines that would help catch conditions such as Mattie’s.
“Her being alive now is going to help a whole lot of other babies and families. … We’re going to make change,” Allison Beacham said.