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‘Maddie’s Law’ cleared by committee after parents describe missed newborn lab flag that delayed diagnosis
Summary
Senate Bill 1574 (Maddie’s Law) would add a direct bilirubin screen for biliary atresia to Florida’s newborn panel using the existing blood specimen; parents testified that earlier action could have prevented catastrophic outcomes for their child.
The Senate Committee on Health Policy voted to report favorably Senate Bill 1574, known as Maddie’s Law, which would add targeted screening for biliary atresia to the state newborn screening program using the same heel‑stick blood specimen already collected at birth.
Sponsor Senator Bracey Davis described biliary atresia as a rare, rapidly progressing condition in which blocked bile ducts can lead to liver failure without timely surgery. "Evidence shows that surgical intervention performed within the first 30 to 45 days of life offers the best chance of delaying or even avoiding liver transplant," the sponsor said.
Parents of a child identified as Maddie gave emotional testimony describing a high direct conjugated bilirubin that hospital staff failed to flag; their child ultimately needed a liver transplant and prolonged critical care. "All of us get total bilirubin. Every baby gets the total, but her direct... was 13 times higher than normal," Maddie’s parent told the committee, urging adoption of the screening change to ensure earlier follow-up.
Supporters told senators the direct bilirubin assay can be performed on the same blood draw already taken in hospitals, requires no additional heel stick and is available at Florida clinical laboratories; proponents said the additional testing is cost‑neutral compared with the potential avoided costs of transplants and long hospitalizations. The bill was reported favorably as a committee substitute.
