The heartbreak of Sudden Infant Death Syndrome is being turned into hope, as parents who have lost babies to the medical mystery are helping fund a research study by a Seattle doctor who hopes he is close to confirming what causes the deaths and formulating a way to predict which babies are susceptible.
Dr. Daniel Rubens, an anesthesiologist at Seattle Children's Hospital, has partnered with The Lullaby Trust in the United Kingdom and pediatrician Dr. Peter Fleming of Bristol University in England to conduct the Oto-Acoustics Signals in SIDS, or OASIS, study. The two-year study will begin in May.
The hypothesis is an inner-ear defect puts babies at risk of SIDS, since it dulls the impulse for a baby to automatically rouse and reposition itself when it is having trouble breathing. That lack of oxygen, Rubens believes, causes a buildup of carbon dioxide in the body, and the baby suffocates.
"It's difficult because nobody really knows what this baby is doing 10 minutes before he or she dies," Rubens said.
Partnering with researchers in the United Kingdom will give Rubens access to data from the standardized hearing test administered to all babies born there. That data will be compared to death records from babies who have been classified as having died from SIDS.
The United States doesn't have a standardized hearing test for babies; practices vary state to state. According to the Arkansas Department of Health, Arkansas requires every newborn to receive a hearing screening before leaving the birth hospital.
Part of the study is supported by The Fred H. and Mary S. Dore Charitable Foundation based in Bainbridge Island, Wash. The foundation was formed by a couple who lost a daughter to SIDS.
SIDS is the leading cause of death in infants 1 to 12 months old, and about 2,000 babies born in the United States die each year from it, according to the National Center for Health Statistics.
According to an Arkansas Infant and Child Death Review Program report compiled by the Injury Prevention Center at Arkansas Children's Hospital, sudden unexplained infant death -- which SIDS falls under -- was the No. 1 cause of death in infants in the state in 2014. The peak period for these deaths is between 29 days and three months.
The report states that "from the review of these SUID deaths, 58 percent listed an inappropriate or unsafe sleep environment, while co-sleeping was listed as a contributory factor in 41 percent of the reviewed SUID cases."
Rubens, 53, has been researching SIDS since 2007. His work is fueled, in part, by his love for his daughter, Hannah, 17, a student at Ballard High School, and by his work putting babies under anesthesia.
"I am very drawn to this," he said. "I look after babies when they are asleep and when I hear about a SIDS death, I wonder, 'Why did that happen?'
"I feel a very strong pull to understand, to really get it, to figure out what is happening to these babies, to do the research and demonstrate that this is correct so we can do something about it."
Rubens and Fleming are partnering to review the death records of babies who have been classified as having died of SIDS and compare them with newborn hearing tests of control babies born during the course of the study.
Rubens will also partner with Dr. Marta Cohen, a pediatric pathologist at Sheffield Children's Hospital in the United Kingdom to review CT and MRI imaging of the inner ears of infants who die unexpectedly.
The goal of the study is to develop a standardized hearing test for infants born in the United States that would identify babies at high risk for SIDS.
"This is tricky," Rubens said of developing a test, "so we need to do it properly and slowly and carefully."
"You've got to doggedly stick with it, carefully, and it will come in time."
Shea Stewart contributed to this report.
Family on 04/27/2016