An empty crib

Even many nurses and doctors are unaware of all the latest scientifically based guidelines for preventing sudden infant death syndrome, whose rate has declined little in Israel.

By JUDY SIEGEL-ITZKOVICH
Newborn baby [Illustrative] (photo credit: INIMAGE)
Newborn baby [Illustrative]
(photo credit: INIMAGE)
There is nothing more shocking, agonizing and unexpected for new parents than walking into a room and finding their baby lying lifeless in the crib. But although it is largely preventable, this tragedy has occurred to 568 Israeli families in nine years and many tens of thousands in other developed countries around the world.
The figures in Israel are only estimates because unlike the situation in most countries, for reasons of Jewish law (Halacha) and cultural reasons, almost no autopsies are performed here to determine the exact cause of sudden infant death syndrome (SIDS, or crib death). But according to Atid, the Israel Association for the Prevention of and Research Into Crib Death, while the rate here is among the lowest in the world, it has remained quite steady; in other Western nations, it dropped by as much as 70 percent over the last 25 years. Misinformation, ignorance and lack of proper counseling in Israel have been blamed for this.
Why, in this child-oriented society, has too little been done to prevent crib deaths? The voluntary association – which is among the few to treat this subject seriously and work hard to educate the public, doctors and nurses – recently held an important, six-hour conference to update hundreds of medical professionals on the latest SIDS research. It was held in the auditorium of Jerusalem’s Shaare Zedek Medical Center because Atid’s chairman, SZMC ear-nose-and-throat specialist Dr.
Anat Shatz, is the association’s chairman and been active in the field for years.
While the motto for reducing and preventing SIDS has in the past few decades been “Back to Sleep” (always to put babies to sleep in the supine – on the back – rather than prone – stomach – position or on one side, it has been changed to “Safe Sleep.”
The most important rules include always placing infants to sleep on their backs, day and night. Many parents are misled or confused by professional advice and believe that infants should be on their backs at night but can be put to sleep on their stomachs during the day, said Shatz. Putting the baby to sleep on its stomach raises the risk four-fold. While the supine position is – along with pregnant women not smoking and having no tobacco smoke in the baby’s environment – a key guideline, there are many others of which some obstetrics and neonatal intensive care and well-baby clinic nurses are unaware.
A RECENT Atid survey of nurses in hospitals and Tipat Halav clinics found that while the vast majority of them were aware of the recommendations on sleep position or smoking, a majority were unfamiliar with other scientifically based Safe Sleep rules.
These include placing the baby to sleep on its back on the lower third of the mattress; tucking the blanket/s under the mattress on the bottom and sides, with the cloth reaching the baby’s shoulders; encouraging the use of a pacifier during sleep. Another new rule based on research is not allowing the infant to sleep in a sal kal (baby seat) anywhere, including a car, when unsupervised or for more than 45 minutes, especially if the seat is at an angle of more than 30 degrees.
Breastfed infants are 36% to 50% less likely to die a crib death, thus giving baby formula is a risk factor that the companies omit in their advertisements. Breastfeeding reduces infection, leads to better central nervous system development, creates beneficial sleep patterns and different oral development and reduces the SIDS risk by 36%.
Dr. Deena Zimmerman, a pediatrician in charge of the mother-and-child department at the Jerusalem District Health Office, noted that breast feeding reduces respiratory and other infections and creates better sleep patterns and oral development compared to bottle feeding of formula. If the mother has to be away from the baby and pumps breast milk, it is “much, much better giving bottled mother’s milk than bottled formula,” she added.
Zimmerman objected to the fact that only 55% of new Israeli mothers surveyed had been given their babies for breastfeeding of colostrum just after delivery. Two-thirds of women said their babies had been given formula in the neonatal department, with or without the mother’s consent.
“Women were poorly informed. Only a tablespoon of colostrum, the liquid that appears before breast milk comes in, is produced on the first day. They think they don’t have enough milk and think their babies will ‘starve,’ but all babies naturally lose weight then until the regular supply comes in.”
Other important rules are not to swaddle the baby tightly so it can’t move while sleeping, and not to overheat the room – 22 degrees is the ideal temperature; if more warmth is needed, dress the baby in a few thin layers.
The mattress should be firm. There should be no pillows, toys or other objects in the crib besides the tucked-in blankets. Do not use crib “bumpers” tied to the sides for supposedly preventing the infant from banging its head; infants have died from entanglement or smothering.
Infants should sleep in the same room as parents for at least the first six months of life – but should never sleep in the same bed.
Premature babies, even if they have reached a proper weight, are at significantly higher risk of SIDS than those born at term and 80 times more at risk if they are put to sleep in a room separate from parents.
The most common hours of crib deaths are between midnight to 6 a.m., and it is more common for boys than girls. About 1.5 times more deaths occur in the winter months, when respiratory infections tend to occur, than in the summertime.
The experts discourage the use of underthe- mattress sensors to determine whether the baby is breathing, as they are not accurate and cause needless tension in parents and many false alarms.
Interestingly, the survey showed that younger nurses answered correctly more than veteran nurses, who had learned in school about the obsolete recommendation of prone-position sleep. Nurses also may not always give mothers the intended messages.
Shatz reported parents being certain they were told that babies should sleep at night on their backs but “could sleep on their stomachs during the day,” which is totally wrong.
Other poll findings included the fact that only 33% to 40% of infants are put to sleep on their backs – and in ultra-Orthodox (haredi) families, the figure is frighteningly low at 19%, similar to that in the Arab sector. SIDS deaths are three times more common in Arab than Jewish families. First-time mothers are more likely to follow the latest guidelines, but those with large families tend to ignore them.
But younger mothers who smoke also tend to ignore the rules.
Shatz said that 99% of SIDS cases occur before the age of six months, after which infants are able to turn over from their backs to their stomachs in any case. But some cases do occur until the first birthday, so the other guidelines should continue to be followed. In addition, smoking and drinking alcohol by pregnant women and smoking after delivery by mothers and fathers significantly raise the dangers. So do rooms warmer than 22 degrees centigrade, overdressing babies and putting pillows, unnecessary blankets and toys or other objects in the crib.
Other practices to be avoided are putting babies to sleep in a baby seat (sal kal) and those meant specially for car trips – and even awake, they should not be seated in them unsupervised or for more than an hour or so.
Crib bumpers to prevent knocks to the head are risky because infants can get entangled in them. Pacifiers reduce the risk of SIDS; newborns should be placed on their backs in the lower third of the mattress with the blanket tucked in at the sides and bottom and not just thrown on.
Babies should sleep in their parents’ room for at least six months but never in the same bed as the parents. Premature babies who have reached a good weight are still at greater risk of SIDS than non-premies of SIDS; if they sleep in a separate room during the first half year, they are at 80 times the risk of SIDS.
The emphasis now, said the many expert speakers, is Safe Sleep and not just Back to Sleep. SIDS figures are not exact here, as almost no infants who die suddenly undergo autopsies, and few have scans, tissue samples removed or invasive instruments inserted.
DECADES AFTER a family suffers a tragedy it can remain just as fresh and painful, according to Celine Michlis, a mother of four living in Elkana who had the horrible experience 19 years ago.
“It isn’t easy, even now, to talk about it, to open up the old wounds,” she told the audience from the stage. “Around Purim in 1997, we found our healthy son, Amit, lifeless in his crib. He was one of a pair of twins, with his sister who had been sickly as a baby, but it happened to him. All efforts to resuscitate him were fruitless. A Magen David Adom medic who came asked us if we wanted an autopsy to determine the cause of death, but we told him intuitively that we were against it. How would it help, we thought.” In fact, it would have helped determine whether the baby boy they subsequently had was at risk for SIDS.
“We had a funeral and began a new, sad chapter in our lives. We tried to rehabilitate ourselves,” said Michlis, who was dressed in black. She contacted Shatz, who, she felt, “really understood and gave us counseling.
Atid saved us, as we had lots of talks with psychologists and attended support groups.”
She confided that she suffered from guilt, as she had regularly put the twins to sleep in the prone position.
“I thought it would make them sleep better.
I sinned. It drove me crazy.”
Amit’s sister will soon mark her 20th birthday, but “the hole in my heart, for him, remains. I came to talk to you to educate medical professionals and parents now.”
Parents’ investment in babies is total, said Shosh Levinson, a clinical psychologist and Atid volunteer. “When [a baby] dies, it is as if there is no future. They may lose their appetites, have sleep problem and suffer from depression. Just seeing the same brand of baby carriage can bring back painful memories.
We try to match families with [fresh] tragedies with those who went through it years ago. [This] can reduce their feelings of guilt and anger. Some think that if they return to their routine, they are traitors to their baby, or just want to keep things private.
They might feel guilty for not thinking about the baby for a few hours a day.”
The situation poses many sensitive situations, such as what to answer when clerks or acquaintances ask how many children they have and what should be written on one’s identity card. Does one mark the deceased baby’s birthday or anniversary of death? Friends may cross the street to avoid speaking to bereaved parents because they don’t know what to say. How does one discuss the matter with surviving children? As for having more children, if the SIDS victim was the first, most rush to have another, but those with other children tend to wait.
Some turn the room into a museum full of photos, clothes and toys, while others send everything away, said Levinson. “Time can heal. We try to explain that there is hope and a future, while never forgetting the one who perished. Helping other SIDS families helps a lot.”
FORENSIC PHYSICIAN Dr. Hadas Gips described how rare autopsies of presumed SIDS victims are in Israel.
“I see only about 10 of the average 50 babies suspected of having died a crib death, and am permitted to do only about one autopsy a year,” she explained. “Every infant death must be reported to the police and the Health Ministry, but an autopsy is not required unless violence is seriously suspected.”
Some investigations such as taking tissue samples can be done in the emergency room.
On occasion, an internal exam is made with equipment such as a spinal fluid puncture or an MRI or CT scan. Records are kept. But if the body arrives with no external trauma, doctors... don’t do anything. There are just about one or two [infanticide] cases a year.”
Session chairman Prof. Francis Mimouni, head of neonatal intensive care at Shaare Zedek, noted that in many hospital emergency departments there are arguments regarding whether expensive tests should be performed on deceased infants as neither the health funds nor the medical centers want to pay for them.
Jewish law is very clear on when autopsies on newborns are permitted, required or forbidden, concluded Rabbi Prof. Avraham Steinberg, a senior pediatric neurologist and Israel Prize-winning expert on Jewish medical ethics.
“Because of the sanctity of the dead, an autopsy of a Jew of any age is usually forbidden.
But for specific cases, to clarify the cause of death, as if here is a suspicion of murder, to find a murderer guilty or to free an innocent person, it is permitted.” He added that if solid evidence is needed to get insurance coverage, if medical (anatomical) knowledge is needed and most especially if an autopsy can save the lives of others, it is permitted. An autopsy might detect a genetic disease or other cause of death that could save subsequent children.
The removal of organs for transplant is also justified. Biopsies of fluids and tissues are always permitted, Steinberg said. Jewish law requires that the body must be treated with utmost respect; the doctor must not eat, drink, smoke or tell jokes during the procedure.
It is to be hoped that the Safe Sleep message will filter out to the general public now that medical professionals have been taught the new evidence-based guidelines, and the SIDS rate in Israel will begin to drop.