INDIANAPOLIS – We’re digging into a screening that could save your child’s life – that is, if it were required in Indiana.
The Hoosier State is just one of six that don’t require a screening for severe combined immunodeficiency (SCID), although doctors in our state do screen newborns for a host of conditions and diseases.
One in 55,000 people are born with SCID. It’s a condition made famous in 1976 by the movie “The Boy in the Plastic Bubble.”
SCID – also known as alymphocytosis – is a genetic disorder that makes its victims extremely vulnerable to infectious diseases.
One local mom says if SCID had been caught earlier in her baby, it could have saved his life.
Rachel Williams’ son, Tyler, was born with SCID in 1994. Only – in Tyler’s case – Rachel had no idea he had SCID. The doctors had no idea either.
"Basically it's when you're born without an immune system,” Rachel Williams said. “He had asthma, then he started losing weight. It was one little thing after another."
It progressed until Tyler was just 2 and ½ years old.
“He took a nap that day and had a stroke,” Rachel said. “Ten days later, he passed away.”
His SCID became apparent too late. They had started his treatment after he became ill.
But with that tragedy came a lesson. It's a lesson she went national with when ABC News and 20/20 featured her.
CATCH UP | 20/20 features Indiana mom on a crusade for SCID screenings
When Rachel had twins a year later, she had them tested right away.
As a result, she was able to treat one of them – her son Mason – for SCID immediately.
Now 15 years old, Mason just wrapped up his freshman year of high school.
“He’s here. He’s alive. He’s healthy,” Rachel said.
The early detection made all the difference.
It’s why it’s so bothersome to her that, now there is actually a test to identify SCIDS, Indiana doesn’t even require it. Some doctor’s offices and hospitals don’t even offer the screening.
And that’s all despite the fact that it’s been 6 years since the U.S. Department of Health and Human Services first recommended all newborns be screened for SCID.
“I’m just not sure what the delay is,” Rachel said.
The Indiana Department of Health says it is studying adding SCID screening here.
But Rachel says that’s been the case for years, and it’s never actually moved ahead.
So what can you do?
Calling around, we learned in many cases you can ask your pediatrician to have the SCID screening done.
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