After more than a decade of research on the childhood disease, a Seattle Children’s doctor thinks he’s close to a simple solution.
Daniel Rubens is onto something.
The anesthesiologist at Seattle Children’s believes he is close to finding the cause of Sudden Infant Death Syndrome (SIDS), one of the cruelest medical mysteries out there and the cause of some 4,000 deaths annually in the United States.
These are seemingly healthy babies; little ones who were just put down for an afternoon nap or checked on minutes before by parents who were steps away. Somehow, their breathing becomes restricted, and they suffocate.
It is cruel and crushing, a lifelong sadness that can’t be shaken — or answered.
“It’s so helpless for the parents,” Rubens said the other day. “And I can’t walk away from it.”
Rubens, 52, has spent the last 11 years doing research — work that received a much-needed boost from his first fundraising event, held a few weeks ago to benefit the SIDS Research Guild that he founded a year ago.
The event raised about $20,000 — not a lot, but enough to keep Rubens working on his hypothesis: that SIDS could be related to an undetected, inner-ear dysfunction that makes it difficult for a baby to automatically rouse and reposition itself when it is having trouble breathing. They don’t have the trigger that tells them to move and access fresh air, so they just stop breathing. They suffocate.
“These babies have inner-ear damage, but they can’t tell you,” Rubens said. “They are too young to sit up. The baby has got a problem getting air.”
To that end, Rubens is advocating for more research that would lead to a hearing test to be performed on babies within 48 hours of birth. That screening would detect the unique hearing dysfunction that puts babies at risk for SIDS. Those babies would undergo a more thorough clinical exam within a month.
The research is based on a Rhode Island Department of Health study on infant hearing. That study found that in a test group of 31 babies who died from SIDS, all scored lower across three different sound frequencies in the right ear. Babies without the hearing malfunction survived.
The one post-mortem of four babies who died from SIDS found that all had bleeding and extensive damage in their inner ear.
Rubens re-created that condition in lab mice. “And the animal is at risk of an exact, SIDS-like event,” Rubens said. “The more I look at this, I see it’s correct and we need to see this through.”
It’s unusual for an anesthesiologist to go into research like this, but Rubens’ work seemed to ready him for it. He is trained to closely monitor breathing and feels closely connected to the babies he puts under sedation. He talks to them, comforts them and urges them on.
“I look after babies sleeping every day (in the operating room),” he said. “I feel totally at home in that situation. We see, every day, when babies have trouble with their breathing.”
Rubens wasn’t born a researcher, and funding for projects with little potential profit is hard to get, he said. (“It’s not making a new drug.”)
But he has gotten pretty far with just over $100,000 from parents and colleagues and from selling his own environmental photographs and paintings — and by forming the research guild at Children’s.
He was born in London, where his mother converted to Orthodox Judaism. She sent him and his sister to Yeshiva School in Crown Heights, N.Y., where he found himself in the thick of racial tensions. He remembered a woman dropping bricks from an open window. They fell just inches from his head.
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“Going to medical school was easy, by comparison,” Rubens said.
While visiting his sister in Australia, he decided to enroll in the University of New South Wales, where he got his medical degree. He came to Seattle on a fellowship in 1999 and stayed.
His SIDS research started in 2002, when he read an article “and was drawn to the mystery about it. I did anesthesia, which helps me look at it in a different way — and I say that with humility.”
To keep his mind clear, Rubens runs around Green Lake, meditates, takes photographs and cares for his 16-year-old daughter, a student at Ballard High School.
She was there at his recent fundraiser, along with some of the couples who have lost children to SIDS and are helping Rubens by sharing their experiences with him — and their own research.
Darcy and Robert Torres flew up from California to talk about their daughter, Aleah, who died in 2007 at 3 months old.
“The way I chose to grieve was to delve into research,” Darcy Torres told the gathering. She surveyed 400 parents in her SIDS network and shared what she learned with Rubens.
“I felt privileged to have the families there,” Rubens said. “I listen to the parents, and somehow, I’m just pulled to this.
“I am not going to give up. We will find a way.”