Sudden Infant Death Syndrome: a Cruel and Unusual Mystery

Grieving father holding young daughter

October marks Sudden Infant Death Syndrome Awareness Month, a time when parents of children taken too soon grieve and recall special memories, but also a time to learn more about SIDS and how to cope with the aftermath of such a tragic experience.

SIDS is defined as the death of a child less than a year old that is unexplained and unexpected after a complete analysis of the cause of death, according to the American Sudden Infant Death Syndrome Institute website.

Charlotte Wenham, a registered nurse, SIDS expert, mother of two boys, and business manager for Snuza mobile baby monitors, said by e-mail that the unexplained nature of SIDS can be extremely difficult for parents to accept.

“While understanding the reason for death does not change the fact that they will no longer see their beloved child grow, it can serve an important purpose in the healing process,” Wenham said.

Parents have to come to terms with a lifestyle change in addition to the loss of an immediate family member. Typically, they also have to deal with interrogation by police and medical examiners, Wenham said. Parents sometimes struggle with feelings that they somehow caused the death of their child after this intense process, even though they’ve been reassured that there was nothing they could do to prevent it.

The aftermath of SIDS for parents can involve severe emotional responses, grief, and questions about life. Immediately after the death of a child, shock, fear, anxiety, and depression might manifest, Wenham said. Besides managing their own emotions, parents have to help any other children cope with the traumatic loss of a sibling as well. Depending on the ages of the other children, they may develop a fear of sleeping because that’s how their young brother or sister died. Other areas of their lives could also be affected, such as academics.

“In addition to the usual grief emotions of denial, anger, and guilt, parents who have experienced the loss of a child from SIDS can also experience certain other reactions unique to their situation,” Wenham said. “Many parents feel a heightened sense of fear and anxiety for older siblings, or children born subsequently, which can change the way they parent. Insomnia and nightmares can be common, as can physical symptoms such as loss of appetite, stomach aches, heartaches, and a lack of concentration.”

For years to come, parents will experience the pain of losing their child. Wenham said the sense of loss may be heightened during celebrations for other peoples’ children, such as graduations or birthdays. Mother’s Day and Father’s Day can also serve as difficult reminders. These are times when friends and family should be counted on for support, if only to lend an ear or shoulder.

“Grief is often a lifelong experience,” Wenham said. “There is no magic time frame for the pain to dissolve, the wounds to heal.”

Parents might consider joining a support group to talk to others in their situation, or they might simply isolate themselves from the outside world—maybe even a combination of the two. Wenham said there is no “correct” way to cope with SIDS.

There are resources for parents who are willing to use them, such as the SIDS Alliance/First Candle support line. Various organizations also have support groups, such as local SIDS networks, the CJ Foundation for SIDS, and First Candle. Parents sometimes create websites in memory of lost children. Others gather family to celebrate the short but special life of their child on the birthday or day the child passed away.

Peter Seymour, who lost a child to SIDS on Aug. 2, 2010, is developing a monitor—called Ella’s Monitor, after his daughter Eleanore—that could potentially diminish the threat of SIDS for many parents. He said by e-mail that giving parents access at home to the advanced monitoring equipment commonly found in hospitals can help fight SIDS.

Seymour said his daughter died three months to the day of her birth. His wife found her not breathing that morning. He said he rushed in and picked her up, but she would not wake up.

“I am no psychologist or therapist, but having experienced both the birth and death of a child, I can say that nothing can compare,” Seymour said. “Ella’s death was not just the loss of a treasured family member, it was the loss of my very own future. There would be no more dirty diapers, no more sleepless nights. My reality became hauntingly lonely.”

He said every part of his life has been affected by the death of his daughter, and that he feels a sense of hopelessness and uselessness despite taking steps to move past the hurt.

Seymour said the main way to cope with the death of a child from SIDS is to remove the blame from the situation and to give yourself “freedom from the responsibility of their death.” He said he didn’t do this initially, instead blaming himself and his fiancée. This slowed his healing process, he said.

“Ultimately, the biggest coping mechanism for me was to simply forgive myself,” Seymour said. “It may seem obvious and trite, but truly it is where my grieving process began.”

In time—about nine months, he said—he went to family and friends for support.

“My coping process, at least my healthy coping process, did not honestly begin until I welcomed help,” Seymour said. “To any bereaved parent, I would beg them to seek out pillars of support as soon as possible. These pillars, both friends and family, were absolutely critical to me, and without them I would not have been able to cope.”

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  • polly

    polly

    October 5th, 2012 at 11:32 AM

    I find this to be one of the most incredible sadnesses that any parent could face. There are always so many questions about what could have been done differently, the parents questioning what they did wrong when most of the time there is just no answer for those questions. It is so terrible to watch a family who has given so much and sacrificed so much to become parents to have to go through something like this. There will never be any kind of rememdy for that sadness, but I do think that it could help some families better endure the pain if there was at least some answers to what causes this and how it could possibly be prevented.

  • mabel h

    mabel h

    October 5th, 2012 at 11:44 PM

    its never ever going to be easy for a parent to have their little child go away.and the cause being unknown only adds to the bad feeling.it would then in most cases make the parent feel somewhat responsible and I can imagine they would ask themselves if they could have somehow prevented that.

    but I guess this very feeling is a hurdle to their recovery.there is good advice by Peter Seymour here and it would be great if the doctors involved in such cases could offer such advice to parents to cope with their loss.

  • Jayma

    Jayma

    October 6th, 2012 at 6:13 AM

    Even once there are answers we have to rememebr that this will not take away that brutal pain of losing a child.

    Yes, I know that this has not happened to me and that if I was a parent who had experienced this type of loss I would wish to have answers too.

    But please don’t assume that just because you may come across some answers that this will make it all okay, because when you experience something as painful as this loss then nothing could make up for that.

  • martina

    martina

    October 7th, 2012 at 11:03 PM

    an irreplaceable loss indeed.and there can be noting worse than losing a child for a parent.but even after such a devastating time,we need to realize that preventing further loss is something we ought to do.

    having seen a friend lose a child I can say that it takes a lot of courage and emotion to overcome it but there are ways you can really overcome the loss while still cherishing your little angel.maybe a memorial or something to remember the child would be a good way and a means to do good and engage in helping others maybe.that gives immense joy to a battered soul and I hope more people find solace.

  • shirley

    shirley

    October 8th, 2012 at 4:04 AM

    It makes it even harder for parents when they are naturally considered to be at fault somehow, like something that they did makes them be blamed for the incident.
    Add to this having to go thru the struggles of being questioned by lawmakers, and this could be even harder for them to navigate. How could you ever lose a child and then know that there are people out there who hold you fully responsible?
    Horrible. I know they have to do their jobs, but it would help if they could let it all go a lot sooner than many of them do.

  • sheryl

    sheryl

    September 26th, 2014 at 6:05 AM

    I was a grandma of a three and a half month old baby boy who was taken from me while in my care. On June 9th 2014 I feel so guilty that its my fault because I laid him down on his Tummy. I checked on my grandson in 45 minutes later and found out he was gone. He never woke up. I was in shock. What happened to me and my daughter and her husband was horrifying. Why? Did this happen? I don’t know how to forgive myself and now I’m being investigated through the state if Nebraska because I am a daycare provider. Out of 26 years if childcare I have never had anything like this happen in my business. Tyler was my 1st and only grandchild.

  • clara

    clara

    October 8th, 2012 at 4:05 AM

    there must be so much of emotional burden on the parents,to have a child taken away without a reason.and the feeling of guilt could crop up to and anybody close to such a family should make it a point to tell them how the parents are not responsible and I think it only makes sense to involve yourself in a program to help you because any help at a time like that could be beneficial and may well prevent the slipping into depression for the parents.

  • Brayden

    Brayden

    October 8th, 2012 at 5:30 PM

    It seems that there has to be an answer that we are missing with SIDS. There has to be some common point that we are all missing.

  • Leslie U

    Leslie U

    October 9th, 2012 at 3:10 PM

    One of the more difficult areas is asking parents who have gone through this certainly tough emotional experiences to then talk about it and relay their own feelings. That’s so hard for them to do- I know that I have witnessed many couples have continuing difficulty with this because of the fact that sometimes you just don’t know what to say. So how do you encourage open and honest communication when there is still so much hurt and maybe even anger to muddle through? You wnat them to feel like they can talk, but at the same time you have to remember that this can very much be like pouring salt on an open wound.

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