Surviving the Aftermath of SIDS

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Chapter Four
Surviving the Aftermath of SIDS

“Fear and Anger”
“Grief Ruled Me”
Plagued by Guilt
Placing Blame
“Life is Insistent”

People who have lost children to SIDS suffer from grief that seems unbearable. They wonder how they can go on living without their child, and they question whether they will ever be happy or normal again. They are overwhelmed by feelings of grief, guilt, and anger, and many become severely depressed. Melissa Eason experienced this sort of grief after her son Cooper died of SIDS in March 2006. She later wrote:

It's only been 11 weeks since I was with my boy but it feels like 11 years. I don't want to do anything. I can't work, I can't stay home, I can't go back to OUR home, I can't stand, I can't sit, I can't eat, I can't sleep, I can't be alone but I can't be with people either. It's just impossible. Nothing else seems to matter to me… . My boy, my Cooper. I will never be the same person again. I will never be the “normal” happy person I once was. I will carry this around until the day I die and nothing will ever make it “OK.” Cooper is etched into my heart, into my soul, into my body and mind forever.51

“Fear and Anger”

When parents, like the Easons, are the ones who find their child dead, it is horrifying for them. They must always live with that terrible memory, as Jessica Tamblin explains:

To this day I still remember, in vivid detail, how cold and lifeless Justin was when we found him. At first everything was a blur, like this could not possibly be real. Then reality set in and I started screaming his name, willing him to wake up, but he was already gone, and I dropped to my knees and sobbed. Sometimes when I think about it even now my body starts to shake uncontrollably. You'd think I would be over it after all these years, but there is no way to get over something like that. Time does heal, I realize, but not completely. Never completely. The fact is, when your child dies, part of you dies too. I don't think either Ed or I will ever feel whole again. It's simply impossible to return to normal after a child has been ripped from your life.52

One fear that is commonly shared by people who have lost a child to SIDS is of having more babies. They are terrified that they will have to face losing yet another child. They also fear for the children they already have. Tamblin says that after her son died of SIDS she was consumed with fear that his twin brother would also be taken away from her. “I became fiercely protective of him,” she says. “I watched him like a hawk and barely slept at night because I drove myself crazy jumping up to check on him, to make sure he was still alive and breathing. Ed did the same thing. For probably six months after Justin died we were like a couple of walking zombies.”53

Cathy Meinecke was also afraid after her infant son Brenden died of SIDS, but her fear was mostly for herself. She wondered how she could possibly go on without him. She found that she could barely function, that she was just going through the motions of living. In the wake of her son's death she felt “lost, confused, hurt, angry, and scared.” Meinecke says that she knew she had to survive, but she had no idea how she would do that. “Fear and anger is a constant companion after the death of a child,” she writes. “Fear and anger crowd out so many of the more healing emotions, taking the space that love would normally occupy. I had to find a way to get beyond those emotions… . I was afraid if I did not keep moving forward I

would stop and never start again.”54 She adds that her grief over losing Brenden radically changed her:

I was a shell of the happy, bubbly woman I had once been. I could no longer believe that everything in life was going to be alright just because I was a good person. I had gone to church, prayed every day, volunteered for charity and cared about my fellow man. I had been a good wife, mother and daughter. I fit none of the criteria, in my mind, that warranted this punishment from the universe. And I had no idea of how to deal with this change in my paradigm.55

Meinecke tried to go back to living her life just as she had before Brenden died, but she found that to be impossible. Although she had never asked for any sort of help in the past, she realized that she could no longer face her grief alone. She needed to reach out to others and seek help, which she says was the most important step in her journey toward healing. She began going to conferences and camps for grieving families. She also sought out other bereaved parents because she knew that, unlike most other people, they personally understood what she was going through because they had experienced it themselves. “I could handle comments like, ‘you're wallowing in pity,’ because I respected the fact they had been there also,” she says. “I could let them sympathize or be tough with me. At times, I became angry with them, only to realize my anger was not with those who were trying to help me. I was just angry—angry at the world. But, I could be less angry with someone who had also lost a child.”56

Having a support network helped Meinecke cope with her grief, but she had still not found anything that could help her on an ongoing basis. So she turned to unusual therapies such as massage and aromatherapy. She also began to study Reiki, a Japanese technique for stress reduction and relaxation that also promotes healing. She says that Reiki helped her to start to restore balance in her life and health and to reconnect with her spirituality and faith. The combined therapies helped Meinecke relax and taught her about the importance of living in love rather than fear, as she explains:

Fear crowded my other emotions and left nothing for others, even in the best of times. I could not be complete when I was in such a negative space in my life… . As I healed my energy, I found that I was able to put fear and anger into perspective… . I found that what I had been longing for was right there when I knew how to reach for it. It had been there all along, even though so much of the time I had felt like it was lost.57

Meinecke believes that her life will always have a hole in it because of the loss of her son. But in the years since his death, she has become more and more able to heal and move forward. She is now a Reiki master who gives treatments to others and teaches them the techniques she has used for herself. “I take my life one day at a time,” she says, “and try to be kind to myself each day. It is not always easy, but I try. Life does go on.”58

“Grief Ruled Me”

Like Meinecke, Kathy Whelan also lost a baby boy to SIDS. Michael, whom his parents called Mikey, died in 1990 when he was four months old. Whalen still grieves for him today. She vividly recalls the suffering she went through after his death. “In the early days, grief ruled me,” she says. “I lived minute by minute. I willed myself to get out of bed, to take a shower, to breathe another breath. The clock didn't move without me thinking about my son. Missing his warm breath on my face. I lost my dreams when he died, and I didn't have the courage to dream again. I lived an unthinkably frightening nightmare.”59 About three weeks after Mikey died, Whelan went to her aerobics class. She had continued to go throughout her pregnancy, and the other women knew her baby was a boy. But because she did not socialize with them outside of class, no one there knew about Mikey's death. She could not bear the thought of telling them about it and watching their shocked reactions. She not only feared what they might say to her, she was also afraid of how she would feel as she told them. She was not able to face that, so she decided to keep silent. As the class progressed, however, she became overwhelmed with sadness and had to leave. She sat in her car, looking at the empty car seat that had once held her son, and she sobbed as she mourned his death. After that she intentionally avoided situations where she might see acquaintances who did not know her baby had died, and she continued to do so for several years.

Tamblin also recalls how difficult it was to face people after her son's death because in trying to comfort her, they made her feel worse. “I am convinced that most people do not have a clue what to say to a grieving parent,” she says. Tamblin explains:

This is really not brain surgery—all they have to say is, “I'm sorry” or “I loved him too” or “I'm here for you” but do they stop there? Oh no. They always have to offer words of advice and even though they may not realize the effect it has on grieving parents, they come off sounding totally callous. When people said to me, “He's in a better place,” or “In time you won't feel so sad anymore,” I seriously wanted to scream at them. They hadn't lost a child. They hadn't lived through the hell that Ed and I did. They had no idea what we were going through, so how could they know what it was like? How did they know how long we would need to heal? But the worst, the very worst, was the people who actually had the nerve to say, “Well, at least you still have Jeremy,” or “You're still young, you'll have more children.” I seriously wanted to hit them in the mouth.60

Ingrid Doyle, a woman from Ireland, lost her seven-month-old daughter to SIDS, and she, too, suffered because of people's reactions to the news of her baby's death. But in her case, it was because people avoided her. “Lots of people came to Hannah's funeral,” she says. “There was an outpouring of grief. However, afterwards people found it hard to talk to us. Some would cross the street to avoid us. I know they felt uncomfortable, but all we wanted them to do was ask how we were and if we needed to talk, we would have let them know.”61

A Mother's Sadness

When parents lose a baby to SIDS, it is devastating for them. They all handle their grief in different ways. Often they reach out to others, as was the case with Jennifer Hernandez of Vallejo, California, who posted the following about her son's death on the Silent Grief Web site:

Well I am really not good at things like this, but I am hoping this will make me feel better before I lose it… . I lost my son William on March 8, 2002. He was only 3 months and 18 days old… . I can't even find the words to express the hurt and pain I feel about Williams death. It had been just me and William from day one… . He was my sunshine. Just waking up to him every morning and seeing his smile made my day. Just having him in my life made me happy. I will never understand why? I tell myself every day he is in a much better place… . How am I [supposed] to go on and move forward when I feel like I just want to stay in bed with the blankets over my head? I don't go anywhere and I don't want to be around anyone. Even going to the cemetery to visit his grave is a task for me anymore, when I used to look forward to going. I know someone feels the same way I do. I am just rambling on and on. I guess I just need some support from others who know and feel my pain. Help?

Jennifer Hernandez, “My William,” Silent Grief, December 13, 2002. www.silentgrief.com/share/index.cgi?view_records=1&Category=SIDS+Loss&ID=580.

Plagued by Guilt

In addition to the grief people feel after losing a baby to SIDS, many suffer from extreme feelings of guilt. They begin to question everything they did, thinking that they were somehow responsible for their child's death. After Michael Bissonnette's son died from SIDS on Thanksgiving Day in 2005, he blamed himself for the baby's death. “I blamed myself a lot,” he says, “because I was the one to lay him down. I was the one to feed him. Did I burp him enough? Should I have kept him up? I think ‘should ofs’ haunted me for a while afterward. Family and

friends helped comfort me when I made those comments and could say, ‘there's nothing you could have done.’”62

The National SIDS Resource Center says that Bissonnette's reaction is common among people who have lost children to SIDS. “SIDS parents also are very often plagued by ‘if only's’ that they are never able to resolve,” the organization writes. “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.'”63 For these parents, it is little consolation that SIDS was diagnosed because it leaves so many questions unanswered. It is impossible for them to understand what caused their child's death because by its very definition, SIDS means there was no cause. Another problem is that many people do not know very much about SIDS or even know what it is. When SIDS unexpectedly claims the life of a baby, family members, friends, coworkers, and neighbors may be suspicious of the parents. This is especially true because SIDS strikes seemingly healthy babies with no warning. Being suspected of harming their child compounds the grief that parents are already suffering.

Tara Ahrens knows what it is like to feel the heart-wrenching grief and guilt after losing a child because her own baby boy died of SIDS. She writes: “People who have lost a child have endured the most awful and life-altering devastation a human can experience. Parents of SIDS babies, in particular, will suffer a life of grief, guilt, self-blaming and self-loathing, and they will never be the same. We will never feel that subsequent babies are ‘safe,’ ‘healthy,’ or ‘just sleeping.’”64 Ahrens becomes angry whenever she reads articles that attempt to explain why SIDS infants die, as though the deaths could have been prevented. She references one particular article that pinpointed things parents had done “wrong” that “caused” their babies to die, including smoking. Even though smoking is known as a risk factor, no one knows whether babies who die from SIDS after being exposed to smoke would have lived if they had not been exposed. “My son died for no reason,” she says, “meaning, he was never exposed to smoke, was sleeping on his back in a climate-controlled car, was full-term and average birth weight. I took prenatal vitamins, got regular exercise while pregnant with him. I studied SIDS and was very informed and well prepared on how to ‘prevent’ it when he was born. I would love to know what anyone would tell me I did to cause my son to die.”65 Ahrens adds that the last thing grieving parents need is to read articles that list things they could have done and should have done in order to have kept their babies alive.

Placing Blame

Yet even the knowledge that they could not have prevented SIDS does little to console people whose babies have died from it. They are left feeling shocked and bewildered, wondering why their child had to die. Sometimes parents blame each other. According to pathologist Henry Krous, the impact on a couple of losing a baby is often devastating, and divorce is

common in the aftermath of the death. Parents may also blame doctors who had pronounced that the baby was healthy right up until the time of death, or emergency medical personnel who could not save their baby. If the baby died while in day care, some parents blame the caregivers, erroneously believing that if they themselves had been there, their child would still be alive.

It is not uncommon for people who are suffering from horrible grief to blame God. They find themselves questioning God, wondering how he could be so cruel as to take their child. After Edge lost her daughter Kaitlyn to SIDS, she directed her anger toward God, as she explains: “It was so unfair and to this day I still feel like it is unfair. I used to look up at the sky and scream to God why? Why did he take my healthy, happy, and well-cared for baby, why? When there are so many abused and mistreated babies in the world. It was like nobody could answer that question. To this day I still ask WHY? I just want to know what I ever did to be so severely punished.”66

Even people who have a strong spiritual faith often question why God would take their child. Todd and Angie Smith lost their baby nephew Luke to SIDS in May 2008. That would have been painful enough, but their own daughter, Audrey, had died of medical complications just seven weeks before. The Smiths, who were still grieving over the loss of their baby girl, were devastated over Luke's sudden, unexpected death. At the funeral home, Angie stood and looked down at him and could hear crying throughout the viewing room. She explains:

Often times the guttural, aching sounds gave way to hushed prayer, and I realized that this is the mark of the believer in this horrifying moment. “Lord, I am empty, I am angry. I want it to be different. You could bring him back right this second if you so chose … but, it feels like for reasons we do not understand, you have chosen this instead … and so, we come humbly, barefoot, with our heads bowed, and we just ask for you to help us survive this grief.” If we didn't need Him so much, we would all be tempted to turn our backs, I'm sure.67

“Life is Insistent”

After a baby dies of SIDS, parents experience a wide range of emotions. They feel excruciating grief, as well as guilt, fear, and anger, and they wonder if life will ever be the same. They may blame each other, themselves, caregivers, or God. But as time passes, healing begins, and their pain diminishes a little more each day. Although they will never forget the child that they lost, they can and do eventually return to living again. Whelan shares her thoughts:

How long must you grieve after your baby, the centre of your universe dies? I expect that I'll grieve for a lifetime… . But now I know what grief feels like and I'm not so scared about recovering from a particularly painful day. I'm not losing my sanity, I'm just grieving. What helps move your grief along is life. Life is insistent. There are other children to raise. Lunches to pack. Meetings to attend. And if I feel sad about Mikey, I don't fret. I cry because I loved him. I miss him. And there is nothing wrong with that.68