New Arizona law requires screening for rare disease in newborns

Posted at 10:25 PM, Aug 10, 2017
and last updated 2017-08-11 01:25:55-04

A new law went into effect in Arizona this week, requiring a screening for SCID, Severe Combined Immunodeficiency Syndrome, in newborns.

It's a very rare condition where a baby is born without the ability to fight off disease. A Valley family testified during committee hearings to help push the bill into law.

Anyone who saw 2-year-old Angel spinning and playing with his siblings today would never know that he spent almost the first year of his life in the hospital.

"I just sat there and I looked at him and I just started crying," said Angel's mom, Rachael Pirie.

Pirie was given the tough news that her youngest son was diagnosed with SCID when he was three months old. What started off as a bad cough, turned into a life-saving diagnosis.

At Phoenix Children's Hospital, Angel was kept in isolation. His parents had to wear masks and growns to hold him.

"He really is just in a bubble," said Pirie. "He couldn't come out of his room."

SCID is rare. It affects about 100 babies born in the U.S. each year, with about two to four diagnosed in Arizona each year. It's also much more common in the Native American and Hispanic communities.

"When I found out that a bunch of states screened and Arizona didn't, I was very disappointed," said Pirie.

"As of Wednesday, we've been testing all new born babies for SCID," said Dr. Cara Christ with Arizona Health Services.

Christ was a big advocate, supporting Governor Doug Ducey's push to add SCID to the list of 30 diseases babies are already screened for a birth.

"The earlier you identify these kids, the better chance you have of implementing treatement earlier and preventing those infections," said Christ.

The treatments can range from mild to extreme.

In Angel's case, he had to have a bone marrow transplant. But is doing very well today.

"It's still unbelievable, even just a year later and he's thriving, it still just feels unreal," said Pirie.

The Navajo Nation is an exception in Arizona. They have been screening for SCID in newborns since 2006.