'Bubble Boy Disease' added to newborn screenings in Wash.

Credit: KING

'Bubble Boy Disease' added to newborn screenings in Wash.

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by HEATHER GRAF / KING 5 News

KTVB.COM

Posted on October 10, 2013 at 1:29 PM

SEATTLE -- The Washington State Board of Health is rolling out big changes to newborn screenings, that both parents and doctors are celebrating.

On Monday, the board agreed to add Severe Combined Immunodeficiency, or SCID, to the list of illnesses that babies are tested for immediately after birth.

Children with the genetic disorder, more commonly known as 'Bubble Boy Disease' are essentially born without an immune system. 

"It was made popular by the movie 'The Boy In The Plastic Bubble' and some people call it bubble boy disease from that," said Doctor Troy Torgerson, who is a clinical immunologist at Seattle Children's Hospital.

The movie was about young David Vetter, who died in 1984, after spending 12 years living isolated in a plastic bubble.

"The immune system that normally protects you from infections, viruses, bacteria, and fungus is not present or it doesn't work," said Torgerson.  "So these babies are born and they don't have really any ability to fight off those things, so any little infection can make them severely ill or be life threatening for many of these kids."

That's why Torgerson calls Wednesday's decision to require SCID screenings for newborns a major victory for both physicians and families.

If the disorder goes undetected in an infant, he says the survival rate is 50 percent.  With newborn screenings and early detection, doctors can start fighting SCID before a baby starts to get sick, and the cure rate goes up to 90 or even 95 percent.

"This is taking a child who is essentially guaranteed they're not going to survive and allowing them to grow up and go to school and have families of their own , so it's pretty cool," Torgerson said.

The federal government actually approved the SCID screenings for newborns back in 2010, but because it is an unfunded federal mandate, it took a few years for Washington lawmakers to find the money to pay for it.

All babies born after January 1, 2014 will be given the SCID test during their required newborn screenings.

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