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Simple test at birth saves baby from ravaging disease

SEATTLE--Two babies in our state were born with an immune system disorder, within months of each other. One died after simply catching a cold. The other is thriving today, thanks to a simple difference.

He was born after state-mandated testing for the disease. With early detection, doctors were able to save his life.

The ordeal started mysteriously for the baby's parents. When Ezra Dixon made his debut on April 7, 2014, he seemed perfect. But as the Dixons celebrated, a tiny drop of Ezra's blood was in a lab, undergoing the newborn screening test every child in the state receives.

The test now includes a screening for Severe Combined Immunodeficiency, or SCID. Ezra was nearly the 23,000th baby tested since screening became law at the start of the year, and he was the first hit.

"We were just really confused by everything because he seemed completely fine," Ezra's mom Rachel said. "But the blood test showed that he didn't have a full immune system."

SCID is more commonly known as the "bubble boy" disease, made famous in the 1976 movie starring John Travolta. We've come a long way since the film about a young man kept in plastic sealed rooms to protect him from germs. Today, a bone marrow transplant can rebuild a baby's immune system. But until a match is found, germs are a major concern. The common cold can ravage a baby's body when there are no T-Cells at work, as is the case with SCID.

Ezra was never quarantined in a plastic bubble, but he was separated from his toddler brother. "If he were to get sick, he wouldn't have any way to fight that," Rachel said. "And a 2 year old is an incubator for all sorts of germs and stuff, so they needed them to stay separated."

But it turned out, while Judah's germs had the potential to be lethal, his bone marrow had the power to cure. The brothers were a match. Doctors were able to do a transplant while Ezra was still healthy. Before screening, babies were terribly ill before SCID was diagnosed , let alone treated.

"We, in a way, have outsmarted the disease," said Dr. Lauri Burroughs of Seattle Children's Hospital. "We've caught up to it and been able to figure it out. It's just exciting to feel like you're one step ahead whereas before you were always 10 steps behind."

Getting SCID into the state screening took three years of appeals to the state legislature. Dr. Suzanne Skoda-Smith, clinical director for the Division of Immunology at Seattle Children's, was at the forefront of the push. She said the taxpayer cost is $8.10 per child, and critics argued it was too much money to screen for an ailment that affects about one in every 50,000 babies. But the cost of treating a critically ill child with SCID with a later diagnosis is much higher, Skoda-Smith said.

Parents who lost babies to SCID testified in front of the Washington Legislature, and the Dixon's are grateful. They say they will also share Ezra's survival story, in hopes of getting the screening in every state.

"To me there's no question," said Ezra's father Zach. "From a 50% chance of survival without the screening, because kids are already sick by the time they catch it, to a 95% chance of survival if they catch it at birth. I can't put words to how thankful I am that we have this screening now."

By the time Ezra takes his first steps, he'll have no memory of his medical ordeal or Judah's gift. But the brothers are bonded by blood and marrow.

"In the long run he's going to grow up, both of them are going to grow up knowing that he saved his brother's life," Rachel said. "And without it, even now we may not have him."

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