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HOLLANDER'S LOSS 25 YEARS AGO LEADS TO ONE OF TOP SUCCESSES IN NATION'S PUBLIC HEALTH
Record - 8/13/2017
On an April morning 24 years ago, Joel and Susan Hollander found their 41/2-month-old baby lifeless in her crib. Their third child, a perfectly healthy girl, had died in her sleep of Sudden Infant Death Syndrome.
For Susan, the months and years immediately afterward are still a fog. There was no explanation. Although more than 7,000 babies died that year of SIDS, so little research was available, she said, "we could basically find nothing about it."
Carly Jenna Hollander would have turned 25 this year, and the foundation her parents created in her memory has helped focus public awareness and research on the issue. The CJ Foundation for SIDS has been part of one of America's greatest public-health successes:
Between 1990 and 2015, deaths from SIDS plummeted to 1,600 - falling by more than 70 percent. New Jersey has the lowest rate of sudden, unexpected infant death of any state.
SIDS deaths have fallen "more significantly than any other cause of death in adults or children" in the last 25 years, according to Dr. Harold Perl, a neonatologist at HackensackUMC and co-medical director of the SIDS Center of New Jersey, which receives funds from the foundation.
The foundation - headquartered at Hackensack University Medical Center - played a part in that success by raising more than than $50 million to combat the mysterious syndrome and funding research. It has also helped groups that support grief-stricken families.
SIDS is now considered one of three categories of "sudden unexplained infant death." It is grouped with other accidents that occur in bed, such as suffocation or strangulation when a baby becomes entangled in blankets, wedged between a mattress and the wall, or unable to breathe when a parent rolls on them. About 900 babies a year die that way and another 1,200 die of unknown causes, according to the federal Centers for Disease Control.
Despite the strides, SIDS is still the leading cause of death for infants between their first month and their first birthday. They were all children who appeared perfectly healthy when put to sleep and yet never woke up.
The decline in deaths "fills me with a minute of joy and then great sadness," because babies still are dying, said Barbara Ostfeld, program director of the SIDS Center of New Jersey at the Robert Wood Johnson Medical School, part of Rutgers Biomedical and Health Sciences. What the trend shows, she said, is that "change is possible."
Ostfeld's passion stems in part from her own losses: decades ago, two of her children died in childhood, not of SIDS but of Tay-Sachs disease, which is incurable and fatal. "I would do anything not to sit with another family in grief," she said.
Her message is clear: babies belong on their backs to sleep, in their own, uncluttered cribs. Progress against SIDS is due in large part to a national "Back to Sleep" campaign launched in 1994 that taught parents and caregivers to put their babies face up at sleep-time.
That campaign subsequently was rebranded "Safe to Sleep," to convey not only that "back is best," but that babies should be placed in a crib, on a mattress intended for that crib that is covered only by a tightly fitted sheet.
To generations of parents who thrilled to decorating the nursery, her message may come as a surprise. "Leave everything out of the bed," said Ostfeld. "No quilts. No blankets. No stuffed animals. Bumpers are toast."
Four jurisdictions - Ohio, Maryland, Chicago and Watchung, New Jersey - ban sales of crib bumpers. Ostfeld wishes more would.
In addition, she said, no sleeping together. Adults should "share the room, but not the bed."
The challenge is to sustain that "Safe Sleep" message, said Ostfeld, a professor of pediatrics at the medical school. Not only must families and caregivers follow the advice every time they lay their baby down, but - with 103,000 births in New Jersey each year - pediatricians, nurses, and caregivers must begin anew with each one. And then repeat it at each well-baby check-up.
She has a retort for doubting grandmothers, too. Those moms who remember putting their babies to sleep on their tummies a generation ago are likely to tell new parents, "Look at you - you turned out fine!" Said Ostfeld: "Not fine - lucky."
She advises young mothers to take the grandparents to the pediatrician with them for the baby's check-ups, so they can hear the science-based guidelines directly.
But Ostfeld acknowledges that while she works to identify the risk factors for SIDS and educate others to reduce risk, "not all these deaths are preventable."
Tinisha Hood knows that.
Her baby died 12 years ago. Yet she still can give a minute-by-minute account of those fateful hours.
Miqhayla was 15 weeks old, a breast-fed baby who slept on her back in a bassinet attached to her parents' bed. She woke up as usual for her 10 o'clock feeding that August night. Later, at 1:37 a.m., "something just told me to get up," said Hood, who lives in New Brunswick, "and she was gone." Not breathing.
"I did everything they told me to," she said. "I did the checklist! And still it happened."
The ambulance came. The ER doctors did their best.
Even now, Hood said, "no matter how far I've come in life, there are days I still sit down and I replay things. I wonder what I could have done, maybe. And after I go through all those wudda, cudda, shuddas, I get right back to: There was nothing I could change."
These days, she's a special-education teacher who's studying for her doctorate. Hood, 35, counsels other families who want to talk with someone who understands as only another "parent survivor" can the grief of losing a baby to SIDS. It is a special circle of hell. "When you experience the loss of a child, you feel empty," she said. "When you lose a child to SIDS, that's a diagnosis of exclusion." She means it's the diagnosis left after other causes of death are ruled out. Unlike parents who lose a child in a car accident or to cancer, with SIDS, "you spend your whole life, you know, wondering why? Or questioning yourself."
That parent-to-parent contact is made possible through the SIDS Center of New Jersey, established by state law in 1987 to study SIDS, educate and train parents and professionals about steps to reduce risk and help bereaved parents. The center has two locations, at the medical school in New Brunswick and at HackensackUMC.
The center responds to each sudden, unexplained baby death in New Jersey, where, by law, the county medical examiner must conduct an autopsy, and staff from the examiner's office conduct a "death scene" investigation, based on guidelines the center helped develop. The baby's medical history is reviewed and the data becomes part of the center's research work.
The center meets with the family to offer counseling, which can extend for months; its semi-annual memorials for families who have lost children are bonding experiences even decades later.
Research conducted by the center, as well as the Boston Children's Hospital, where much of the CJ Foundation's research funding went, and the National Institutes of Health has identified these risk factors:
Prematurity. The earlier the baby arrives before its due date, the greater the risk of sudden, unexpected death.
Exposure to tobacco smoke, both prenatally and afterwards. No level of exposure is good. A pregnant woman who smokes increases the risk of SIDS or other sleep-related death six-fold. Even if members of the household smoke, or - in substandard housing - a neighbor's smoke seeps into the home, the risk of SIDS rises.
Bed sharing. Adult beds are soft; they often have fluffy pillows, soft blankets, plenty of bedding - and another person. An infant may be suffocated or trapped. Babies who bed share are more than three times more likely to die of SIDS than babies who sleep alone. Unfortunately, bed sharing has become more common in most states.
Overheating. "If you see the hair curling at the back of the neck and they're hot and moist," the baby is too warm, Ostfeld said. Once infants can maintain their body temperature, they should not be overdressed.
Poverty, which is higher in the African-American community, also plays a role, Ostfeld said at a conference on black infant mortality organized with the Partnership for Maternal & Child Health of Northern New Jersey in Newark. "In addition, our black infants are less likely to be placed on their backs, more likely to bed-share and more likely to be premature," she said.
In New Jersey, black babies are three times more likely to die in their first year of life than white babies.
In the last few years, research has also pointed to a region of the brain known as the hippocampus that appears to play a role in SIDS deaths. Autopsy findings have shown that more than 40 percent of the infants in a study group whose deaths were attributed to SIDS had an abnormality in that region, which regulates breathing, heart rate and temperature control. It's thought that this defect makes it harder for infants to rouse themselves from sleep when they lack oxygen.
Babies with this inborn defect who are exposed to a major risk factor such as being placed on the stomach for sleep are more likely to die.
Further research may find genetic markers for this defect. But for now, all babies must be treated as if they are vulnerable.
And so the work goes on.
Their Hollanders "unfortunately, put SIDS on the map," said Susan, who served two terms as executive director of her daughter's namesake foundation. Joel was station manager at WFAN when Don Imus, the radio host, raised millions of dollars for the foundation and other charities. But as the number of deaths dropped, memorial contributions, too, became less frequent. Now fundraising is more difficult.
It has been exhausting work. A SIDS death like Carly Jenna Hollander's is so quick and unexpected, "it's almost like your body goes into shock," Susan said. "Grief is just overwhelming. I talk to parents all the time and I know what they're going through."
That's what has kept her going. But now, "we've lived and breathed it for 24 years," she said of the couple's work with the foundation, which earlier this year merged with another to become CJ First Candle. "It's time for us to move on with our lives."
Watch a video of Tinisha Hood telling her tragic story. Visit njersy.co/SIDS