SIDS is a devastating medical mystery — one that kills some 4,000 babies annually, and seemingly inexplicably, in the U.S. alone. The Mayo Clinic describes Sudden Infant Death Syndrome as “the unexplained death, usually during sleep, of a seemingly healthy baby less than a year old.” Unexplainable up until now, perhaps. After more than a decade of research into the illness, one doctor in Seattle believes that he might have come close to discovering the cause of Sudden Infant Death Syndrome. If he’s right, this could be a life-saving discovery, many times over.
Dr. Daniel Rubens, 52, works at Seattle Children’s Hospital as an anesthesiologist and has been researching SIDS since 2002, according to TheSeattle Times. That year, he read an article and “was drawn to the mystery about it.” Mystery indeed — in a 2008 article on the syndrome (also known as “cot death” or “crib death”), The Guardian reported, “Its cause is still unknown and many factors could have contributed to the death of the child.” The writer notes that SIDS deaths usually occur when the baby is sleeping, perhaps more so if the child is sleeping face down or sharing a bed with parents.
Most SIDS victims seem otherwise healthy, and as such, their deaths come as an immense shock. Parents might put their baby down for a nap in its crib, or nestle the infant in beside them to sleep; when they come back or open their eyes, the child is no longer alive. “It’s so helpless for the parents,” Rubens told the Times. “And I can’t walk away from it.” His dedication has seemingly paid off: The doctor believes he has possibly isolated the cause of the syndrome.
Rubens' hypothesis is that SIDS is related to an undetected inner-ear dysfunction that makes it difficult for the baby to automatically wake up and reposition itself when its airways are restricted. “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.”
Although it’s uncommon for someone of Rubens' particular specialty to go in for research like this, he points out that his work in anesthesiology has perfectly prepped him for the job. “I look after babies sleeping every day [on the operating table],”he said. “I feel totally at home in that situation. We see, every day, when babies have trouble with their breathing.”
His research is based on a Rhode Island Department of Health study on infant hearing, which showed that the test group babies with a hearing malfunction were more likely to end up as SIDS victims. A postmortem of several babies who died from SIDS showed that all had bleeding and damage to their inner ear. Rubens re-created this 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.”
A recent fundraiser secured Rubens $20,000 dedicated to that task. The amount raised is not that substantial, but will let him continue doing the work for a while. The fundraiser was the first event held to benefit the SIDS Research Guild that Rubens founded a year ago. Prior to that, he’d got by on $100,000 that was donated from patients’ parents and colleagues and earned from the sale of his own photographs and paintings. He will no doubt need much more before his research can be completed, but he is committed to the cause. “I am not going to give up,” he said. “We will find a way.”
It must be a relief for SIDS-bereaved parents to have a champion looking for answers. The Foundation for the Study of Infant Deaths states that in SIDS deaths, “researchers think there are likely to be undiscovered causes. For many it is likely that a combination of factors affect a baby at a vulnerable stage of development.” The vague intimation of a “combination of factors” is hardly consolation if your ostensibly healthy child has just died.
Until now — bearing in mind that Rubens' hypothesis is unproved and his research is not finalized or peer reviewed — the best that parents could hope for was guidelines on risk factors. In July of last year, U.K. government advisers put together draft guidance on the syndrome that updated previous advice. Previously, parents were advised that smoking or consumption of alcohol on their part upped their child’s risk. Last year, the guidance suggested that not sharing a bed with your infant would decrease the likelihood of SIDS.
But that advice was swiftly denounced by the National Childbirth Trust, who pointed out that half of all mothers share a bed with their child at some stage. Such mothers, the Trust pointed out, would be stigmatized if the draft guidance were passed. Nevertheless, a study reported by the medical journal BMJ Open in May 2013 found that parents who slept with their infant increased the child’s SIDS risk factor five times over.
In Britain, The Guardian notes, SIDS fatalities used to clock in at 2,000 per year. But increased awareness on the issue had led to changing parental behavior and consequently a swift decline in cases — to about 250 in England and Wales. The article suggests that the major driver of the change was parents making sure to put babies to sleep on their backs. Experts have also said that damp and overcrowded conditions could increase children’s risk, making those in lower income families particularly susceptible.
It had previously been suggested that SIDS might be associated with irregularities in the area of the child’s brain that controls breathing and arousal from sleep. Low birth weight and respiratory infection have also been identified as risk factors.
The hypotheses and advice on SIDS are typically vague, with no clearly defined cause — somewhat frustrating, no doubt, for new parents. The syndrome seems to function almost like a bogeyman, liable at any moment to come and spirit your child away. If Rubens’ research is throwing up tangible results (and he insists he is indeed gaining ground), his work might not only save young lives but also dispel the fear and confusion that surrounds this mystery killer.
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