PA law that could save newborns’ lives still waiting to be implemented

This is an archived article and the information in the article may be outdated. Please look at the time stamp on the story to see when it was last updated.

HARRISBURG, Pa. -- A Pennsylvania law which could help a number of potentially deadly diseases in newborns has yet to be implemented by the Department of Health, more than two years since its signing.

Act 148, also known as "Hannah's Law" in honor of a young girl, Hannah Ginion, who was diagnosed with Krabbe disease in 2013, was signed by then-Governor Corbett on October 15, 2014.  The law is supposed to add a number of disorders, including Krabbe, to a mandatory screening list which newborns are tested for at birth.

Two years later, the Department of Health has not fully implemented "Hannah's Law."

If Act 148 was fully implemented after it was signed into law, Lesa Brackbill, of Lower Paxton Township in Dauphin County, feels the screening could have saved her daughter, Tori.

Victoria Brackbill was born July 30, 2014. Lesa still lights up whenever she talks about her daughter.

"She was the perfect healthy baby. Nothing wrong, just perfect," she says.

Five months into her life, however, Tori changed, like a switch had been flipped off, Lesa remembers. Tori stopped smiling. She stopped playing, and she stopped talking. When Tori was diagnosed with Krabbe, her parents had no idea what happened.

"We had never heard of Krabbe," Lesa says. "We had no idea what it was."

Krabbe disease is a neurological disorder which often leads to death in babies if it is not detected in an infant's first days. It is, however, treatable if found, and Act 148 of 2014 is supposed to make screening for Krabbe mandatory. By the time the Brackbills learned about Krabbe disease, it was too late.

Tori died on March 27, 2016, in the family's home.

The Department of Health responded to FOX43 in an emailed statement late Tuesday afternoon, saying the department is required to follow the recommendations of the Newborn Screening and Technical Follow-Up Advisory Board, which determines what diseases face mandatory screening in newborns. Krabbe, as well as three other diseases approved by Act 148 according to the board, have not been approved by the screening board due to a lack of reliable screening tests.

A follow-up email, asking what about the current tests are holding diseases, like Krabbe, back from approval was not returned.

The board plans to meet on November 30 from 10a-1p at the Department of Transportation, Materials and Testing Laboratory, DGS Annex Complex, on 81 Lab Lane in Susquehanna Township.

Lesa says she's taken her political science degree and brief lobbying experience and has become an advocate for the full implementation of "Hannah's Law." She's found an ally in the State Capitol in Rep. Angel Cruz (D-Philadelphia), who befriended Hannah Ginion's family before she passed in 2013.

On Tuesday, Cruz and Brackbill held a press conference at the Capitol to raise awareness for Act 148 and plead with the Department of Health to stop holding back its implementation.

"We can save a lot of money, but more importantly, we can save lives," Rep. Cruz said.

Lesa, meanwhile, says she wants other families to have the chance she says was taken from her.

"No medical treatment is 100 percent guaranteed - even with cancer," Brackbill says. "Those patients at least get to try. We were robbed of the opportunity to even try to save our daughters life because Pennsylvania refuses to implement this law."

Most hospitals will screen for Krabbe disease if you ask, but it's still not mandatory. She says people will assume their child is getting screened because it's law, but that is largely not the case.