ORLANDO, Fla. — Two Orlando parents are urging state and federal lawmakers to update infant screening after what they describe as life-altering delays in their daughter’s diagnosis and treatment.
Allison Walker Beacham and her husband, Michael Beacham, say they are now sharing two-year-old Mattie’s medical journey in hopes of sparing other families the trauma they endured and inspiring change.
Allison, a longtime anchor and host with Spectrum News 13 is speaking publicly alongside her husband because they believe the system failed their child.
What You Need To Know
Orlando parents pushing for “Mattie’s Law” legislation at the state and federal levels to update newborn screenings to include deeper tests that would detect liver disease
The Beacham family is raising awareness about rare disease amid an ongoing legal battle with with Pediatrix Medical Group, which provides services at Orlando Health Winnie Palmer Hospital, and another with Orlando Health itself
The family claims abnormal test given in the first few days of Mattie’s life was never shared with them and led to issues and problems that the 2-year-old is still dealing with
At birth, Mattie appeared healthy. The Beachams embraced their first days in the hospital unaware of what doctors would later discover.
“She looked healthy at birth to us, and we were embracing every moment at the hospital,” Allison said. “Then we went through the checkups for the first couple of months — that’s where things felt different.”
Michael remembers that same feeling.
“(It was) off to us, but not to the doctors,” he said. “They didn’t seem to notice anything. But we kept noticing that she wasn’t growing.”
“It was ‘failure to thrive’ — that was the term we would hear repeatedly,” Allison said.
It wasn’t until Mattie’s two-month checkup, with a fill-in pediatrician, that the severity of the issue became clear.
“I was sitting in the doctor’s office with Mattie a little longer than expected,” Allison said. “This gentleman walks in with papers he showed us the trajectory of her weight. He knew something that we didn’t know in those first two months.”
Doctors diagnosed Mattie with biliary atresia — a rare disease that causes bile buildup and leads to liver damage. They told the Beachams she needed immediate surgery. The parents sought a second opinion, but time was running out.
“How can you not have that time to have second opinions?” Walker said. “There’s got to be something else you don’t have the time. Your baby is going to die.”
“It’s a time-bomb disease — every hour is critical,” Michael added.
Eventually, the family was able to transfer Mattie to another hospital. At just 9 months old, she underwent a lifesaving liver transplant, followed by 182 days in critical care.
Because of how sick she was at the time of transfer, Mattie suffered complications that resulted in the loss of fingers on her left hand. She will need a prosthetic.
Now, the family is engaged in two legal battles — one with Pediatrix Medical Group, which provides services at Orlando Health Winnie Palmer Hospital, and another with Orlando Health itself. The Beachams allege that abnormal bloodwork from Mattie’s fourth day of life was never flagged or communicated to them.
“They knew they had that test,” Allison said. “They didn’t flag it, they didn’t tell us if they had acted in the professional way they were trained to do, our daughter would not be fighting this fight. She would have her own liver.”
“In the simplest form, we want change,” Michael added. “We want to make sure this never happens to anyone else again.”
In addition to litigation, the Beachams are now working with lawmakers to establish “Mattie’s Law,” which would require all newborns to receive a direct bilirubin test — a screening that can detect early signs of liver disease.
Most newborns already receive a universal bilirubin test, but the Beachams say the direct test is critical and may have prevented the delays in Mattie’s case.
Florida Congressman Gus Bilirakis’ office confirmed in a statement that he and his staff have met with the Beacham family and are “committed to working alongside them to raise awareness of this condition and to help improve screening for newborns.”
Michael says awareness is only part of the effort.
“Mattie had the test, and there is still something broken in the system,” he said. “We’ve worked on training programs, had videos produced — cost-free to everybody — to educate hospitals, neonatal units, nurseries, pediatricians. There is a lack of knowledge and a lack of education.”
Despite ongoing legislative and legal battles, the Beachams say their focus remains on their daughter, their “miracle Mattie,” who continues to defy odds.
“She has fought since birth, and she is going to continue to fight,” Allison said. “It is our time now to battle for her and for the other babies.”
Both Orlando Health and Pediatrix Medical Group declined to comment, citing pending litigation. According to the family’s attorney, the case with Orlando Health is currently in arbitration.
As for Mattie, her journey isn’t over. Her parents say she has another major surgery scheduled early next year.