New NY Law Mandates Newborns Be Tested For Enzyme Deficiency - Patch

BABYLON, NY — A New York State law that requires doctors to test newborns for an enzyme deficiency was recently put into effect — thanks to the efforts of one Long Island woman and her non-profit organization.

NY State Senate Bill S4316, which went into effect on June 20, requires doctors to test newborns for glucose-6-phosphate dehydrogenase deficiency, or G6PDD, a genetic-disorder that affects the reproduction of red blood cells.

Keely Harris, 62, of Babylon, founder of The g6pd Deficiency Foundation, told Patch how she's pushed for the mandatory screening after her grandson, Brody, was diagnosed with the deficiency.

Find out what's happening in Babylon Villagewith free, real-time updates from Patch.

"We were all blown away," she said.

Two days after he was born, Brody's parents noticed that he became jaundiced. More than 60 percent of newborns have jaundice, and Brody received phototherapy, a treatment to lower his bilirubin or toxin levels.

Find out what's happening in Babylon Villagewith free, real-time updates from Patch.

The hospital later discharged Brody and his mother. However, his condition only worsened at home.

"Days later the baby was in the neonatal intensive care unit," said Harris.

Brody's levels of bilirubin, a toxic chemical found in blood that causes jaundice, were so high that he suffered a type of brain damage called Kernicterus, she said. He was later diagnosed with G6PDD.

Today, Brody is eight years old but lives with cerebral palsy from the brain damage, Harris said. He lives in Rhode Island with his parents and is just learning how to walk, and can speak a few words.

"He has good will and he's very strong at Math. And with that kind of personality, he's an achiever," she said.

Harris told Patch that if Brody had been screened for G6PDD at birth, his brain damage would most likely have been prevented.

"It's a very simple blood test that can be turned around in hours," she said. "You would have results before that baby goes home."

About one out of 25 babies are born with the deficiency in the United States, affecting more than 400 million people in the world.

After researching the deficiency, she found little advocacy for research about the deficiency, and was inspired to create the foundation in 2015.

"I asked my daughter-in-law, 'What can I do?' And she said, 'Just make sure this doesn't happen to another family,'" Harris said. "Something inside of me said, 'I have to do something.'"

A former biochemist and research specialist in the field of infertility, Harris said she felt her background prepared her for the project.

"It's like, everything I learned in my life has come full circle," she said. "That's why I can understand the genetics behind this. It's like, here I am."

Overtime, Harris grew the foundation with other board members: three physicians, a nutritionist, a lawyer and an accountant who work not-for-profit organizations.

"I started this foundation to bring forth awareness, to bring forth education and screening for the public," she said.

While not every newborn with G6PDD may suffer from brain damage like Brody, Harris said that many people don't realize they have the deficiency. That can be dangerous, as certain medicines such as aspirin can trigger a physical reaction.

Certain symptoms, such as malaise, fatigue or weakness, and abdominal or back pain, can actually come from hemolytic anemia — a condition caused by G6PDD.

For instance, Brody's mother, who suffered from those symptoms, only discovered she also had G6PDD after giving birth at the age of 29.

"The only reason why they're in harm, is when you don't know," said Harris. "When you know, then your life is going to be fine. Then you can live a very healthy way."

In 2019, members of the foundation met with the Millennial Strategy advocacy company, Assemblyman Richard Gotfried, the Department of Health, and State Senator Gustavo Rivera, to launch NY State Senate Bill S4316.

The bill was then forwarded to the state senate, where it was supported by numerous lawmakers.

When the pandemic hit, the all actions were postponed. Finally, in December 2021, Governor Kathy Hochul signed the bill into law.

The satisfaction of the momentous occasion, Harris said, was hard to fully put into words.

"This is a win-win," she said. "Having this is going to have the baby stay healthy forever."

Harris said she credits the bill's success to the support of her family, her husband, and the foundation's board members.

The community of Babylon, she said, was also a strong advocate of the foundation. Prior to the pandemic, a successful paddle board/bicycle fundraiser was held in the town Village of Babylon for several organizations, including The g6pd Deficiency Foundation.

"I got a lot of emails, a lot of responses, and clapping and applause. People were so proud they would beep the horn as they went by my house," she said. "People understood how important this was."

Her next goal, she said, is to make the bill law in every state in the country. To do this, the foundation is launching a new ambassador program, where volunteers help educate their communities about the deficiency.

"This is just the beginning," she said.

If you're interested in becoming a foundation ambassador, email: info@g6pddf.org

To learn more about the The g6pd Deficiency Foundation, click here.

---

Get more local news delivered straight to your inbox.Sign up for free Patch newsletters and alerts.