The CJ Foundation is honored to work with organizations to ensure that SIDS/SUID risk reduction messages are culturally relevant. The target audience for this publication is the Orthodox Jewish community. The CJ Foundation worked with Misaskim's staff to develop the content and provided a $500 grant to assist with the publication costs.
The following article originally appeared in Misaskim's Summer Safety Magazine
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On April 10, 1993, Joel and Susan Hollander lost their four-month old daughter Carly Jenna to Sudden Infant Death Syndrome (SIDS). “The loss of our daughter is something that cannot be expressed in words. It was, and always will be, the most traumatic experience in our lives,” say the Hollanders.
In memory of their daughter, the Hollanders founded the CJ Foundation for SIDS in 1994. According to their website, The CJ Foundation is a national non-profit organization devoted to eliminating the tragedy of sudden unexpected infant and early childhood deaths, supporting grieving families, advancing medical research, furthering parent and professional education, and advocating for the health and survival of all children.
The journey that the Hollanders have embarked upon fulfils the Talmudic principle that saving one life is equivalent to saving an entire world. Since its inception, the CJ Foundation has raised more than 50 million dollars which have been used to fund critical research and provide support programs and awareness-education for the public. The foundation is one of the main organizations servicing the SIDS community.
Through the efforts of the CJ Foundation and other organizations, SIDS deaths have indeed decreased by an astounding 40% in the last ten years. Despite the gains, however, SIDS is still the leading cause of death of infants between one month and one year of age in the U.S. Each year, about 2,500 American families suffer the agonizing heartbreak of losing their babies to sudden death. While SIDS deaths remain medical mysteries, research has uncovered a number of risk factors.
Sleep safety tops the list as the number one risk factor. Babies who sleep in an adult bed, sleep on their tummies, or sleep with soft bedding are at the greatest risk of sudden infant death. Secondhand smoke is another risk factor. Studies have shown that babies exposed to secondhand smoke both before birth and during infancy, have a 2.5 times greater risk of falling victim to SIDS. Overheated infants are also at greater risk. Keeping babies cool and comfortable can reduce the risk of SIDS.
However, unfortunately, SIDS deaths occur even in families where parents are “doing everything right.” Confusion over the seemingly meaningless tragedy compounds the overwhelming grief of losing a child. And often, the accompanying investigation launched by law-enforcement authorities can turn a sudden tragedy into an intense and seemingly relentless interrogation.
Why an Investigation?
Since SIDS is largely a diagnosis by exclusion, a full investigation is required by law to rule out the possibility of child abuse or neglect. This law is especially important in the Orthodox Jewish community, since autopsies are forbidden by Jewish law, and therefore a clear-cut medical reason for death is much more difficult to obtain. “There is a natural cause for deaths in babies that pass away from SIDS. However, investigators need to determine that this was due to a natural cause rather than a criminal cause,” explains Yanky Meyer of Misaskim.
Sensible reasoning notwithstanding, unquestionably the last thing many suddenly-bereaved parents feel capable of doing is dealing with law enforcement officials who now consider the area where the death occurred as a potential crime scene. Assailed by shock, confusion, and mind-numbing grief, most parents are obviously not in the optimal emotional condition necessary to provide clear, accurate answers.
Expert, compassionate guidance is crucial at times like these, particularly because emotions are so raw and the stakes are so high. “If the investigators have the slightest suspicion, they will get child protective services involved, and the parents stand a chance of losing their other children,” Meyer continues. In some instances, parents may face criminal charges, followed by extensive legal proceedings to prove their innocence. “It is because of these repercussions that Misaskim's 24/7 hotline was established,” Meyer says. “We get involved and try to guide a family. We have, unfortunately, been involved in hundreds of such cases and therefore know how the investigation process works, and what the family should expect following their loss.” In addition, Misaskim’s constant contact with law-enforcement officials and Medical Examiners enables the procedure to run smoothly and seem less daunting.
Meyer stresses the importance of having an experienced volunteer at the scene immediately. “Often the investigation begins while the parents are still at the hospital trying to deal with their loss. Meanwhile, there might be police officers at the house securing what they assume for the moment may be a crime scene. A Misaskim volunteer will deal with all this, will ensure the wellbeing of the other children at the scene, and will then assist and guide the parents in every possible way through the necessary legal procedures.”
Avrohom and Chaya Biderman tragically lost their three-month old son, Zevi, to SIDS over 17 years ago. Biderman speaks warmly about the assistance he received even then, in the days before Misaskim was officially launched. “Misaskim held our hands as events unfolded with the Medical Examiner and the police department. As far as understanding the system … they really made it much more manageable.”
To gain a clearer picture of the purpose and logistics of the investigation, Gates of Chesed spoke with New York City Acting Deputy Chief Medical Examiner and Director of Investigations, Dr. Melissa Pasquale. The Director of Investigations since 2009, Dr. Pasquale heads a staff of over 25 legal death investigators. She spoke passionately, yet compassionately, about the purpose of the investigation and the standard procedures that her staff conducts in any case of sudden infant death.
“Since EMS personnel almost always transfer the baby to the hospital, we begin with the hospital investigation. We speak with the ER physician to get an idea of what the circumstances are and we look at the baby to check for any obvious injuries. From the hospital, we move immediately to the scene investigation. Haste is important, as we want to visit the scene before the certainly distraught parents go home and possibly take down the environment by perhaps moving the crib out, or pulling the sheets off the bed, as a normal reaction to a scene that has become so painful to them. At times, the parents may decide that it is just too painful to go back and may become difficult to locate, and there is a lot of information that we need to find out right away.”
The necessary information is obtained by intensive questioning by legal death investigators. Meyer emphasizes to parents the importance of being completely truthful about how the tragedy happened, where the death took place etc. “Somewhere, somehow, the truth will come out, and if they find that you’re lying, they won’t believe you on anything. They’ll ask hundreds of questions, question the parents separately, and if the two stories don’t match up, there’s a problem.”
Says Dr. Pasquale: “We work with compassion, but we take the time we need to ask questions. We ask about the baby’s and other family members’ medical history, about the pregnancy, and what the baby’s life was like. We ask details about the social history, what everyone in the house was doing at the time, and the circumstances of the baby’s death.
“And at the very end, in most cases, we give the parents a doll and we ask them to recreate just how it was when they last saw the baby alive. We ask them how they put the baby down, whether there was bedding or stuffed animals, or anything else, and then we’ll ask them to recreate and show us how it was when they found the baby unresponsive.”
“Picture how traumatic that can be for a mother during a tragedy. However, if we can prepare them beforehand, it makes everything much easier,” says Meyer. Dr. Pasquale reiterates that investigators are not out to accuse parents of criminal action. “We’re always explaining to them from the get-go. We’re going to do everything we can, throw everything we’ve got into trying to figure out why your baby died, and the scene investigation is just one of the things we do in every case. We’re not here to try to accuse you, we’re just trying to understand why this tragedy happened.”
Meyer adds, “We want parents to know for the rest of their lives that they did nothing wrong, because if they did anything wrong, the investigators will find it. Once the investigation has been completed, parents can look at themselves and each can forever say with confidence, ‘I did nothing wrong.’” In addition, Meyer lauds consideration exhibited to families by the New York City’s OCME. “They should serve as a role model for all coroners across the nation.”
Scene investigations provide invaluable information to researchers studying sudden infant death and its causes. As Dr. Pasquale says, “Prior to 1994, when we began scene investigations, every case was ruled SIDS. Now, these investigations allow us to better define how babies are dying, rather than thinking that they’re all dying natural deaths that we cannot diagnose.”
Dr. Pasquale speaks candidly about how she and her staff deal with their own emotions while working in these heartrending situations. “Any time we deal with sudden death, an adult or a baby, we feel very empathetic, but we tend to feel that we are doing something about it and that’s a good feeling. Our work leads to better prevention and education — on safer sleep positions, for example. So although these deaths are incredibly tragic, it’s satisfying to us to be part of something that’s a part of the solution.”
Based on the investigations conducted by the OCME, many sudden infant death babies were found in unsafe sleep situations such as on an adult's bed or couch, with a blanket over the baby's head, or the baby's nose and mouth were obstructed by bedding material.
In a direct message to the community, Dr. Pasquale appeals to parents to practice safer sleep positions for babies. She repeatedly emphasizes what her scene investigations and medical research have clearly shown. Babies sleeping on their backs, in their own cribs, with all bumper pads, stuffed animals, pillows, and decorative paraphernalia removed, have the best chance of not falling victim to sudden infant death. She cites a correlation between studies that show that sudden infant deaths peak at the age of 2-4 months, and other studies that indicate that babies begin to cry a lot and need more attention during the night at that particular age. She explains that parents are simply exhausted and take the baby to bed with them because the baby may sleep better or may be easier to tend to. “And this is when we see the incredible spike in deaths of babies who are dying when they are in bed with other people or dying in unsafe sleep positions.” She warns parents not to let their guard down or relax safety measures during this particularly dangerous period. Dr. Pasquale concludes by addressing what she terms a “myth” among parents who are hesitant to put a baby to sleep on his or her back. “We have never seen the death of a baby sleeping on his back who choked to death on vomit or spit-up. Any neurologically intact baby who is not suffering from cerebral palsy or other neurological disorders will have a normal gag reflex that will make him cough or make the liquid go in the other direction.”
Assistance for Bereaved Parents
One of the first calls Misaskim will make upon learning of a SIDS tragedy is to Rabbi Yaakov Dovid Klar, coordinator of Project C.H.A.I. and director of Misaskim’s Crisis Intervention Team. Rabbi Klar, a certified grief counselor, has been working with bereaved families for over eight years and can usually be found among the first responders to families facing tragedy or crisis.
Described by one parent as “a malach straight from Hashem,” Klar’s practical advice, combined with his huge heart, literally helps bereaved parents survive. “He really saved my life,” says Leah Stein, whose ten week old Chaim was niftar about four months before this interview. “We live out of town and he traveled through the night and just showed up at our door. He encouraged me to attend the levayah, even though family members were discouraging me from doing so. What’s more, he advised me to speak to the baby beforehand and now I’m so happy that I did it. The knowledge that I said whatever I needed to say to him is so helpful to me now.” Rabbi Klar practically implores families suffering infant loss to seek proper emotional help immediately. He explains, “Believe it or not, real emotion doesn’t surface until two or three months after the death; and then brutal reality suddenly hits. It is so important to have someone there in the first 24 hours to prepare them for what they will have to face. That’s my goal: to build them and empower them with the right tools to eventually be able to deal with their devastating grief in a healthy way.” In addition, Rabbi Klar encourages parents to keep the lines of communication open between themselves and their other children by speaking openly about the deceased baby and keeping precious memories alive.
Aside from open communication, Rabbi Klar still emphasizes the crucial need for the baby’s siblings to receive the proper professional support right away. “Don’t try to go it alone,” he warns. “You will avoid so much damage by addressing the children’s emotions when they are fresh, as opposed to dealing with it when trouble surfaces – and it almost always does.“
Aviva Safir lost her oldest child, Shoshana, to SIDS two years ago. She speaks vividly about the agonizing pain of losing a child and how Rabbi Klar provided her and her husband with effective tools to deal with their suffering. “After my baby passed away, Rabbi Klar came and met with us. He gave us his emergency cell phone number, and told us to call anytime (even at 3 AM!), and we did just that! When I began to suffer panic attacks, Rabbi Klar gave me tips on how I could help myself get through them.
“Until my baby died, I never knew that a broken heart can actually hurt physically,” she continues. “I learned where my heart is located from the very real pain I endured. At times, I thought I must not be normal anymore, but Project C.H.A.I. taught us something very significant. ‘An abnormal reaction to an abnormal situation is normal.’ Infant death is abnormal, so if I respond or react in an abnormal way — it’s absolutely normal. It was very validating.” Validation was a common theme in all the discussions we had with parents. “People have no hasagah of the depth of the pain,” Biderman states. “Even now, 17 years later, I still choke up sometimes when I speak about Zevi. There’s a part of you that’s dead forever.”
There is something important that compounds the problem, says Rabbi Klar. “People don’t realize that at the time when the community is beginning to some extent to forget about the tragedy, the harsh reality is just beginning to sink in for the parents. So instead of providing the support the parents continue to need from the community, family and friends start pushing parents to ‘get over it and move on.’”
Rabbi Klar suggests a few succinct guidelines for friends and family members. “The number one rule is: don’t say you understand because you can’t possibly understand. Be very careful not to minimize the parents’ pain and don’t urge them to move on. The only thing you should do is to listen, listen, and listen some more.” All the parents interviewed for this article echoed Klar’s advice. “People keep telling me to get over it,” says Leah Stein. “They don’t understand that I don’t want to get over it. I want to hold onto him, I still want him in my life.” As the CJ Foundation so aptly explains, “You can never get over it, but you can get through it.”
Aviva expressed her deep appreciation for her family’s love and understanding during her difficult times. “My family was very considerate. They gave me all the time I needed to talk about her. At the family Chanukah party, instead of avoiding my deep pain, they spoke about Shoshana openly, and it was so comforting for me to know that they loved her and are keeping her memory alive”.
At the other end of the spectrum, Leah’s voice falters as she recalls a family member’s suggestion that her deep sadness might stem from a lack of emunah. “That was very hard for me,” Leah reveals. “Not only did I lose my baby, did I lose my emunah as well?” When asked what family and friends could do to help, Leah says: “Just lend a listening ear, talk about your memories of the baby, and don’t push me to get over it. I’m sure everyone gets to a point at which they have to move on, but I’m not there yet.”
Fathers are Grieving, Too
In literature provided by the CJ Foundation, Australian psychologist Peter Dunn addresses the often-unspoken topic of men and grief. He writes: “Man has been brought up to be self-sufficient and often resists seeking professional help. He is therefore often left to struggle [alone] with his own feelings and emotions.”
This state of affairs is only magnified in frum circles where men are expected to resume davening with a minyan three times daily, in addition to returning to work the day after shivah is over. Support groups or other forums for grieving fathers simply do not exist in the frum world. Rabbi Klar urges couples to talk about their loss and to understand that men and women grieve differently. His message to them is: “Understand your spouse. Although you are both mourning the same tragedy, you are traveling on a different highway. You’re heading in the same direction, but you’re going to get there in two different ways. Be sure to respect each other’s grieving process and your marriage will emerge from this tragedy strengthened and enhanced.” Mrs. Safir admits that she was initially upset and confused about her husband’s reaction. Her baby was niftar on Erev Yom Tov and after returning from shul on Yom Tov, she discovered him looking for something to read. “I couldn’t understand it. I said, ‘How can you read? You just lost your child!’ It also bothered me that he didn’t talk about our loss and that he didn’t express his pain.
“Then I learned that men and women grieve differently — that many men need to disconnect and try to push the pain away.” She says that the meetings with Rabbi Klar were very helpful for him. “I did all the talking, because he finds that difficult, but he sat there and listened and benefited from the conversations.” On the other hand, Leah Stein says. “My husband was always a bubbly, happy person, but now he’s changed completely. He goes out to work each day, but then he comes home at night and sits on the couch and cries from his unbearable pain. I know that most men have pain and don’t show it, but my husband does show it, and maybe that’s a good thing.”
“I try to be menachem avel other parents,” says Avraham Biderman, who is frequently contacted by Misaskim to reach out to other couples who are stricken with the sudden loss of an infant. “I tell the fathers that there’s nothing wrong with feeling and expressing pain. It doesn’t make you less of a man. It doesn’t make you less of a yid, or less of a yarei shamayim. We cry over the Bais Hamikdash 2,000 years later because it’s supposed to hurt.” Biderman closes the discussion with a word of chizuk for fathers and mothers alike. “I know that it hurts, and it’s so painful and so tough, yet here I am 17 years later, and although it still hurts me, I’m still normal and I live a normal life, and I’ve gone on to do things with my life. And know that after the eibishter gives a ‘zetz,’ He gives a ‘glet,’ and He’ll help you pull through.”