Parental Grief and a SIDS Death

I am kind of tired of trying to explain the complexity of this grief that I feel.  But, I found this interesting link (and have actually found SO many over the last four months) that validates my experience not that it needs validating at all but somehow I keep finding individuals who want to challenge my experience.  This website specifically talks about the complex grief and depression that a parent feels when they lose a child:  About a third down the way on the page, they specifically talk about a SIDS death.  Please take the time to read it (I have posted that piece below)  I recognize that it makes some people so uncomfortable (people who don't even know me) to know that I am depressed.  I think that speaks volumes about the society that we live in.  A society in which I should feel shame that I am so depressed over my child dying.  I have been pretty straight forward about how I feel, even writing the details of my panic attack.  I do not feel ashamed.  I think that grief is complex, that I suffer from complex grief, and that it is important not to sugar coat this experience. The last comment on my blog somehow even seemed to be aggressive in telling me that I am depressed and in saying that they hoped my therapist was skilled enough to identify this.  My therapist is skilled enough to have identified this, so rest easy.  Depression is very serious on the one hand but is also not an abnormal experience to have after a baby dies.  What follows below is the text from the link above about SIDS.  It is right on target as to how this kind of a death makes a parent feel and as to the kinds of responses we encounter:

Parental Grief And A SIDS Death

The impact of a Sudden Infant Death Syndrome (SIDS) death presents unique grieving factors and raises painful psychological issues for the parents and family as well as those who love, care for, and counsel them. SIDS parents must deal with a baby's death that is unexpected and unexplained, a death that cannot be predicted or prevented, an infant death so sudden that it leaves no time for preparation or goodbyes, and no period of anticipatory grief. In many cases, parents of SIDS babies are very young and are confronted with grief for the first time.

SIDS often occurs at home, forcing parents and siblings or other children to witness a terrible tragedy and possibly scenes of intense confusion. In some cases, the parents themselves are the ones who find the child dead and they must always live with that memory. In other cases, the parents may feel overwhelming guilt or anger if the death occurred while the child was in daycare. They may feel that the baby might not have died if they had been caring for it. "All too frequently, a SIDS loss is not socially validated in the same way other deaths are. Others often fail to recognize that, despite the brevity of the child's life, the family's attachment to that child is strong and deep and has been present in various ways since the knowledge of conception" (Rando 1986,167).
SIDS parents must take a journey that "involves a trek through grief-a strange and hostile territory that no one would ever pass through if given the choice" (Horchler and Morris 1994, 17). SIDS parents often retain strong feelings of guilt and sometimes a sense of responsibility for what happened even though they've been told there was nothing they could have done to prevent the death. Sometimes, parents are the victims of undeserved suspicion from law enforcement personnel, even family members, neighbors, or friends. In the most difficult situations, the baby's death may cause parents to be subjected to grueling investigations and hostile questions; they may even face accusations of child abuse.

Probably the most stressful and anxiety-provoking act in human existence is the separation of a woman from her newborn infant. The response to this, which humans share with most of the animal kingdom, is an overwhelming combination of panic, rage, and distress. - RUSKIN, IN HORCHLER AND MORRIS 1994,16

SIDS parents, relatives, daycare providers, health care professionals, and other adults feel helpless in trying to explain the unexplainable to other young children who may have been present at the time of the baby's death. It is especially difficult for children to understand why a baby died when it didn't appear to be sick. Also, in some cases parents are required to explain SIDS to adults who are misinformed or know nothing about the syndrome.
Any infant or early childhood death forces adults to think about their own vulnerability, but a SIDS death also brings with it total mystery, an absence of answers, and a frightening loss of control. The chaos surrounding a SIDS death leaves most parents feeling that nothing in life is predictable; a SIDS death throws everything off balance.

As is the case in most traumatic experiences, SIDS parents are likely to continually replay the events surrounding the death over and over in their minds and in their conversations. Whether the parents put a seemingly healthy baby down for a nap or for the night or took the child to the daycare provider, they assumed their child was well and in a protected environment. They felt secure; their family and their world were in order. Then suddenly, everything has been turned upside down. Even though there may be attempts to reassure the parents that the baby didn't appear to suffer, frequently they are not convinced. They repeatedly ask, "How can a perfectly healthy baby die?" Often these parents are told that SIDS doesn't carry a high hereditary risk; yet fears about having subsequent children haunt them.

[The grief SIDS parents feel is like a]...continuous, crashing waterfall of pain...SIDS is a forced separation that will last forever. In the beginning, survivors are so shocked that their bodies and minds cannot even begin to comprehend all that has been lost...Shock and disbelief overtake most survivors so they can only vaguely feel their own empty arms and the rage that will eventually come full force. ...SIDS parents attempt to transcend the awfulness of [the baby's] death by choosing to celebrate the dead infant's life while not denying the physical finality of the death...[After a SIDS death, parents attempt] to travel the long road of grief to a place of rest and hope...SIDS parents must [try to] actively seek peace and joy in life-even in the face of a grief that will never end... - HORCHLER AND MORRIS 1994, 2, 16, 17, 248

SIDS parents also are very often plagued by "if only's" that they are never able to resolve. They mentally replay such thoughts as: "If only I hadn't put the child down for a nap when I did." "If only I had checked on the baby sooner." "If only I had not returned to work so soon." "If only I had taken the baby to the doctor with that slight cold."

SIDS parents also need to know the value and importance of obtaining reliable information. They need to have access to professional support; and they need to be aware of the great benefits other parents have gained from attending support groups and sharing their experience or by expressing their thoughts and feelings in writing.
Moreover, bereaved SIDS parents often find that health care professionals are as perplexed as they are and cannot provide them with any explanation for the death. Although most health professionals know about SIDS, not all can provide parents with the information they so anxiously seek. They are unable to provide answers to questions such as: "Did my baby suffer?" "What are the possible causes of SIDS?" "What can I do to prevent another child from dying of SIDS?" "Are there symptoms I should have known about that could have prevented the death?"

In the case of some SIDS deaths, the autopsy findings may still leave unanswered questions, or the child's death may be attributed to causes that are problematic for the parents. Some families are subjected to agonizing doubts and delays from the legal system about the exact cause of death. The absence of standardized procedures for determining the cause of unexpected infant deaths brings added pain and frustration to parents already in the midst of a harrowing nightmare. Thus, SIDS parents are often denied the sense of closure that comes from knowing the exact cause of their baby's death.

A single SIDS death can have a ripple effect on as many as 100 people who came in contact with the baby or the family. "The expanded circle of concern" (Corr et al. 1991, 43) can include parents, extended family, neighbors, coworkers, child care providers, health care and emergency personnel, clergy, funeral directors, and other care providers.

SIDS parents and family members need to be around people who will offer them support in a nonjudgmental way; they need to know that some things in their lives are permanent and there are certain people on whom they can truly depend. Other family members, friends, or professionals can provide this sense of dependability and assurance by allowing parents both permission and ways to express their grief and talk about their confusion. SIDS parents need to talk and they need someone to listen-really listen-even if they tell their story, express their doubts and fears, and ask the same questions repeatedly. What SIDS and other bereaved parents are really saying is, "Let me tell you about my pain; let me talk about my child with you; please do call my child by name; please do not let my child be forgotten."

Friends and family members should try to do all they can to show their concern and help the parents in keeping alive memories of their baby. For most SIDS parents, it is also reassuring for others to try to mention special things they noticed about the baby and to remember the child's birthday or the anniversary of the death. By extending these personal and sensitive gestures, loving and concerned relatives, friends, and caregivers can become a source of reassurance and comfort for the grieving parents.

Some SIDS babies are so young when they die that family members and friends never had a chance to welcome them. They may have missed sharing the parents' excitement over the birth and affirming the child's existence. Many individuals do not understand the depth of parental attachment to a very young child. Bereaved SIDS parents should not be made to feel that others don't want to hear them, that others won't permit them to openly grieve. The parents of SIDS babies want their child's short life to matter not only to them, but to their families and friends, to the others in their "circle of concern," to the world.

The dynamics of a SIDS loss [mean]...there is no chance to say goodbye to the infant or to absorb the reality of the loss gradually over time; the unexpected loss so overwhelms people that it reduces their functioning and compromises their recovery...The physical and emotional shock of the infant's death undermines the [parents'] capacity for regaining a feeling of security; the SIDS loss evokes particularly problematic grief reactions, such as the abrupt severing of the mother and father infant bond. - RANDO 1986, 166


Judy Roenke said...

Thank you for posting this. I have been reading your blog daily. My thoughts are with you as you go through this.

marirob said...

Abby, I just wanted to tell you that not a day, an hour goes by without thinking about you, Ted and Maxie. I don't comment as much as I should, mainly because most times I don't know what to say, but I've learned from another friend that the most important thing to do is listen when one has been through grief like you have. And I am here, reading and listening. I smile when I see Maxie's photos and I tear up hearing your sorrow. I say a little prayer for your family every night and I read Good Night Moon to Julia and always end with "Good Night Maxie!" I've realized after reading your post today (which was really informative, thank you for posting it) that I'm trying to keep Maxie alive in our own way, even though we never met him. Ok, enough babbling on my end. Just know there are people who love you and who are listening to you.

Jessica said...

I am so sorry that you need to continually explain and validate your grief and your grieving process. I hope that this post will prove helpful to your "circle of concern" as well as to all the Anonymous folk out there. You should not have to defend your grief, your process, your journey, none of it. I'm sorry that in the midst of the absolute WORST thing that could ever happen to a person, you have to take time and energy to defend your words and your feelings. Most of all, I'm sorry that Maxie is gone. I'm sorry you have to have this blog in the first place. I'm sorry that slideshow runs in your head all the time and that your arms continually feel empty. It's just wrong. Unfair and wrong. I am so, so sorry for the devastating loss of your beautiful boy and this awful journey that you and Teddy are on. I love you both very much. Sweet Maxie is very missed and is always in my heart. xo

robyn said...

thank you for sharing that abby and thank you for what you share with us everyday. as jessica said above, you should not have to defend your grief and i am sorry that people out there have made you feel that way. i love you, ted and maxie very much and am so sorry he is no longer here for you to hug, kiss and love.

Rebecca said...

I have dealt with all sorts. Some of the ones that got to me the most in the beginning were the ones that repeated things back to me in a way to validate them. Like, "Well, of course you're sad. You lost your son and you're going through the grieving process right now." At the time, that bugged me. I KNEW I lost my son. But thanks for pointing that out to me. (I had a lot of anger and frustration in the beginning. As opposed to now when it's just anger. :)

Anonymous said...

What strikes me about this is why anyone would need to do research to understand that parents love their children and are devastated when their children die. What could possibly be more obvious?