- Email: [email protected]
Reaching Out to Help
Suzanne Wambold, PhD, RN, RDCS, FASE
Reaching Out to Help
n Early in my career as a nurse, I worked in the coronary care unit for five years during which time I became comfortable with crisis situations. But none of that prepared me for the death of our son, Scott
176
AWHONN Lifelines
Nurses are frequently thought of as strong individuals who offer support to others. Many critical care nurses are ready for the unexpected and prepared to help others; they rarely focus on themselves. Early in my career as a nurse, I worked in the coronary care unit for five years during which time I became comfortable with crisis situations. I felt comfortable with patients and families in distress. But none of that prepared me for the death of our son, Scott. On December 10, 1980, my husband and I were thrilled with the birth of our son. We had wanted a child and felt so prepared to be parents. The pregnancy was uneventful, the delivery easy. We were blessed with a blue-eyed, red-haired son. But when Scott was two days old, he had an apneic event during a bath demonstration at the hospital. The staff rushed him from our room into the nursery, and a neonatologist was consulted. I felt that since we were in a large hospital setting with a neonatal ICU, they could fix whatever was wrong. After many tests and observation, they determined Scott was fine. They indicated that he was small (6 lbs.) and had a “poor thermostat.” We were discharged two days later and told to see our pediatrician in a week.
Losing Scott When Scott was 10 days old, he again turned blue during his bath. My husband and I did as the nurses in the hospital did; we warmed him with blankets and hugs. Later that evening during his feeding, he did not nurse well and felt cool. To keep him warm, we put him in bed between us, under our electric blanket. Around 7 a.m., my husband asked if I had nursed him during the night. I said no and first thought how great it was to have a baby who slept through the night. Then, my husband put his hand on Scott’s chest and noticed he was not breathing.
(continued on p. 174)
Volume 8
Issue 2
Being involved in a support group served a purpose. In an attempt to find some good in this tragedy, maybe supporting others was a role to play. Only time would tell
I started CPR as he called the paramedics. I could hear my husband’s fists hitting the hallway wall, and I knew it was too late, he was dead. The police arrived, half accusing us of killing him. I thought, how dare they insinuate that because he was in bed with us, we smothered him. We were viewed as common criminals. All I could do was cry. I had performed CPR on so many cardiac patients and had great outcomes, and yet on this day, December 21st, I was unable to save our own son. The coroner arrived and carried our son out the back door. All they said was, “we’ll call you after the autopsy.” They too, acted as though we had done something wrong. Our obstetrician was contacted, he recommended I get some Valium and told us that it was probably a sudden infant death syndrome (SIDS) case. Our parents arrived at the house. I can remember my mother-in-law telling my fatherin-law not to cry. She said “think of the children” without explaining just what that was supposed to mean. It was as if I was caught in a terrible nightmare and could not wake up. I was cold, I was numb and I wanted to be dead. Later that day, the coroner called our house and told us that Scott had a hole in his heart; he explained that we did nothing wrong. Sadly, Scott’s autopsy demonstrated a large ventricular septal defect (VSD), which caused his pulmonary distress, cool extremities and death. Newborn hearts typically weigh 16 grams, but Scott’s weighed 42 grams. Upon review of his chest x-ray from the hospital, which was taken at two days, the report was read as “an enlarged heart, suggestive of congenital heart disease.” But, by the time the report was sent to the floor, we had been discharged and no one followed up with us. Imagine how our trust in the hospital faded quickly.
Time to Grieve Suzanne Wambold PhD, RN, RDCS, FASE, is an associate professor at the University of Toledo College of Health and Human Services, Department of Health Professions, in Toledo, OH. DOI: 10.1177/1091592304265576
174
AWHONN Lifelines
It was December 21st and most of our friends were celebrating the holidays with their families and children. We could not celebrate, we were grieving. Although we had a pathologic reason for our son’s death, we had no answers for “why” or “why now?” I was sickened by the thought of picking out a casket, selecting church readings for a funeral and shopping for a cemetery plot.
Then our phone rang. In hindsight, that call was as if an angel had come to help us. A woman who had also lost an infant son had received our name from the hospital and wanted to meet with us after the funeral. She was interested in starting a support group specifically for parents experiencing the loss of an infant. We were thrilled to meet her.
How Words Can Hurt Our first meeting with this woman, Kay, was unbelievable. It was as though she could read our minds. She knew just how we felt. We felt so comfortable with her that we had many more meetings with her. The conversations were helpful, but she also suggested books that helped us as well, such as “The Bereaved Parent” by Harriet Sarnoff-Schiff (see Box 1 for additional resources). As we spent more time together, it was as if she had a crystal ball to predict the future. She helped prepare us for varying feelings, and how to handle things people would say, such as the pain caused by someone saying, “Oh you’re young, you can have more children.” Did that individual know how long a couple had been trying to have a child? Some would say, “Well now you have an angel.” How many couples want to raise an angel? We wanted a baby to hug and kiss and watch grow up. Others may say, “That’s the way God works,” as if that would be a pleasant thought. Some would say, “Now just wasn’t the right time for you,” or “You should just move on.”
Helping Others People who have never lost a child are clueless about what it feels like to lose a longed-for baby or child. So when our new friend asked us to help start a support group at the hospital, we were anxious to help. Sometimes I think the best helpers are those who have actually experienced a life-changing event and turned it into something positive. Being involved in a support group served a purpose. In an attempt to find some good in this tragedy, maybe supporting others was a role to play. Only time would tell. After receiving training from the hospital, my husband and I began hosting monthly support group meetings with five other newly bereaved couples. The group was titled “Caring
Volume 8
Issue 2
and Restoring Each Other” (CARE) (Promedica, 2003). The group met on a monthly basis at an area hospital. Kay, along with a neonatologist from the hospital, attended each meeting, serving as moderators and providing medical information. The meetings were open to all individuals who had experienced the death of an infant whether it was a miscarriage, stillbirth or postdelivery death. A specific topic was chosen ahead of time to be discussed at each meeting. For example, we talked about funerals, how to handle feeling better and how to handle another pregnancy. We discussed how to handle the “firsts”: the first holiday, the first mother’s day, the first father’s day and the first anniversary of our child’s life and death.
Dads and Grandparents Grieve Too A highly attended meeting was the one that included the grandparents of the infants who had died. It was great to see grandparents interact. After all, they had lost a loved one as well. After talking with other grandparents, many found that they did not always have to be strong for their children. Their children wanted to know that they felt a loss as well and that their deceased grandchild would always be remembered as any one of their grandchildren. Our parents attended this meeting and found out that they should think of us, and cry with us, as well. They did not have to be strong for us, but with us. It seems that grandparents grieve differently and that the grieving process is different for men and women as well. Our society expects men not to cry, but to be the shoulder to cry on. Men are perceived to be the strong ones and work through the stages of grief more quickly than women. In fact, the differences between men and women, and their
April | May 2004
grieving, was one of the topics assigned to my husband for a presentation at a meeting. He found that men as well as women must move through the stages of grief to recover from loss. But the time frame is never the same for parents. That can be a problem if couples are not aware that their feelings may not always be in harmony as they deal with grief. I can remember my husband telling me how it seemed people were more concerned with my recovery than his. Well wishers would always ask “How is your wife doing?” without a follow-up as to how he was handling the loss. Although I had gone through the pregnancy and delivery, he had lost a son. At our meeting, we tried to make couples aware of the different stages of grief so that as they moved through them, their relationship would strengthen as a result of the knowledge they had gained. It’s too easy to blame one another for a tragedy and go separate ways. Understanding each other’s feelings and communicating is so very important due to the increased incidence of divorce in bereaved couples (Sarnoff-Schiff, 1978).
Finding Closure for a Terrible Loss As one of the first members of the CARE group, my husband and I not only attended monthly meetings, we were assigned to couples who consented to have a home visit much like our friend Kay had done for us. This seemed to reinforce the reason we had become involved with the group, to help to restore one another. We participated in the home visits and monthly meetings for about five years. This seemed to strengthen our relationship as a couple as well. During that time, we were blessed with a healthy subsequent child. Our daughter took our journey to a new level. Sadly, there were so many newly bereaved parents that we thought it was time for a “changing of the guard.”
We still spend time with two of the couples we met at CARE, and our families spend vacations and holidays together. There is a bond that was created in supporting one another that will never end. But it would never have started had it not been for the support group. To this day my husband and I draw support from the couples that we have remained close to, for the pain of loss subsides, but the memory lasts forever. References Sarnoff-Schiff, H. (1978). The bereaved parent. New York: Viking. Promedica Hospital. (2003). CARE Support Group. Retrieved July 2003 from http:// www.promedica.org
Box 1.
Getting All the Facts • Books on Miscarriage, Stillbirth, Neonatal Death and Pregnancy Loss: www.mothers35plus.co.uk/ shopbooksMiscar.htm • Compassionate Friends: www.compassionatefriends.org • The MISS Foundation—Kids in Sympathy and Support— (KISS): www.misschildren.org/ kids/index.html • Medline Plus Health Information: www.nlm.nih.gov/ medlineplus/deathanddying. html • SIDS Network: www.sids-network.org
AWHONN Lifelines
175
Reaching Out to Help
n Early in my career as a nurse, I worked in the coronary care unit for five years during which time I became comfortable with crisis situations. But none of that prepared me for the death of our son, Scott
176
AWHONN Lifelines
Nurses are frequently thought of as strong individuals who offer support to others. Many critical care nurses are ready for the unexpected and prepared to help others; they rarely focus on themselves. Early in my career as a nurse, I worked in the coronary care unit for five years during which time I became comfortable with crisis situations. I felt comfortable with patients and families in distress. But none of that prepared me for the death of our son, Scott. On December 10, 1980, my husband and I were thrilled with the birth of our son. We had wanted a child and felt so prepared to be parents. The pregnancy was uneventful, the delivery easy. We were blessed with a blue-eyed, red-haired son. But when Scott was two days old, he had an apneic event during a bath demonstration at the hospital. The staff rushed him from our room into the nursery, and a neonatologist was consulted. I felt that since we were in a large hospital setting with a neonatal ICU, they could fix whatever was wrong. After many tests and observation, they determined Scott was fine. They indicated that he was small (6 lbs.) and had a “poor thermostat.” We were discharged two days later and told to see our pediatrician in a week.
Losing Scott When Scott was 10 days old, he again turned blue during his bath. My husband and I did as the nurses in the hospital did; we warmed him with blankets and hugs. Later that evening during his feeding, he did not nurse well and felt cool. To keep him warm, we put him in bed between us, under our electric blanket. Around 7 a.m., my husband asked if I had nursed him during the night. I said no and first thought how great it was to have a baby who slept through the night. Then, my husband put his hand on Scott’s chest and noticed he was not breathing.
(continued on p. 174)
Volume 8
Issue 2
Being involved in a support group served a purpose. In an attempt to find some good in this tragedy, maybe supporting others was a role to play. Only time would tell
I started CPR as he called the paramedics. I could hear my husband’s fists hitting the hallway wall, and I knew it was too late, he was dead. The police arrived, half accusing us of killing him. I thought, how dare they insinuate that because he was in bed with us, we smothered him. We were viewed as common criminals. All I could do was cry. I had performed CPR on so many cardiac patients and had great outcomes, and yet on this day, December 21st, I was unable to save our own son. The coroner arrived and carried our son out the back door. All they said was, “we’ll call you after the autopsy.” They too, acted as though we had done something wrong. Our obstetrician was contacted, he recommended I get some Valium and told us that it was probably a sudden infant death syndrome (SIDS) case. Our parents arrived at the house. I can remember my mother-in-law telling my fatherin-law not to cry. She said “think of the children” without explaining just what that was supposed to mean. It was as if I was caught in a terrible nightmare and could not wake up. I was cold, I was numb and I wanted to be dead. Later that day, the coroner called our house and told us that Scott had a hole in his heart; he explained that we did nothing wrong. Sadly, Scott’s autopsy demonstrated a large ventricular septal defect (VSD), which caused his pulmonary distress, cool extremities and death. Newborn hearts typically weigh 16 grams, but Scott’s weighed 42 grams. Upon review of his chest x-ray from the hospital, which was taken at two days, the report was read as “an enlarged heart, suggestive of congenital heart disease.” But, by the time the report was sent to the floor, we had been discharged and no one followed up with us. Imagine how our trust in the hospital faded quickly.
Time to Grieve Suzanne Wambold PhD, RN, RDCS, FASE, is an associate professor at the University of Toledo College of Health and Human Services, Department of Health Professions, in Toledo, OH. DOI: 10.1177/1091592304265576
174
AWHONN Lifelines
It was December 21st and most of our friends were celebrating the holidays with their families and children. We could not celebrate, we were grieving. Although we had a pathologic reason for our son’s death, we had no answers for “why” or “why now?” I was sickened by the thought of picking out a casket, selecting church readings for a funeral and shopping for a cemetery plot.
Then our phone rang. In hindsight, that call was as if an angel had come to help us. A woman who had also lost an infant son had received our name from the hospital and wanted to meet with us after the funeral. She was interested in starting a support group specifically for parents experiencing the loss of an infant. We were thrilled to meet her.
How Words Can Hurt Our first meeting with this woman, Kay, was unbelievable. It was as though she could read our minds. She knew just how we felt. We felt so comfortable with her that we had many more meetings with her. The conversations were helpful, but she also suggested books that helped us as well, such as “The Bereaved Parent” by Harriet Sarnoff-Schiff (see Box 1 for additional resources). As we spent more time together, it was as if she had a crystal ball to predict the future. She helped prepare us for varying feelings, and how to handle things people would say, such as the pain caused by someone saying, “Oh you’re young, you can have more children.” Did that individual know how long a couple had been trying to have a child? Some would say, “Well now you have an angel.” How many couples want to raise an angel? We wanted a baby to hug and kiss and watch grow up. Others may say, “That’s the way God works,” as if that would be a pleasant thought. Some would say, “Now just wasn’t the right time for you,” or “You should just move on.”
Helping Others People who have never lost a child are clueless about what it feels like to lose a longed-for baby or child. So when our new friend asked us to help start a support group at the hospital, we were anxious to help. Sometimes I think the best helpers are those who have actually experienced a life-changing event and turned it into something positive. Being involved in a support group served a purpose. In an attempt to find some good in this tragedy, maybe supporting others was a role to play. Only time would tell. After receiving training from the hospital, my husband and I began hosting monthly support group meetings with five other newly bereaved couples. The group was titled “Caring
Volume 8
Issue 2
and Restoring Each Other” (CARE) (Promedica, 2003). The group met on a monthly basis at an area hospital. Kay, along with a neonatologist from the hospital, attended each meeting, serving as moderators and providing medical information. The meetings were open to all individuals who had experienced the death of an infant whether it was a miscarriage, stillbirth or postdelivery death. A specific topic was chosen ahead of time to be discussed at each meeting. For example, we talked about funerals, how to handle feeling better and how to handle another pregnancy. We discussed how to handle the “firsts”: the first holiday, the first mother’s day, the first father’s day and the first anniversary of our child’s life and death.
Dads and Grandparents Grieve Too A highly attended meeting was the one that included the grandparents of the infants who had died. It was great to see grandparents interact. After all, they had lost a loved one as well. After talking with other grandparents, many found that they did not always have to be strong for their children. Their children wanted to know that they felt a loss as well and that their deceased grandchild would always be remembered as any one of their grandchildren. Our parents attended this meeting and found out that they should think of us, and cry with us, as well. They did not have to be strong for us, but with us. It seems that grandparents grieve differently and that the grieving process is different for men and women as well. Our society expects men not to cry, but to be the shoulder to cry on. Men are perceived to be the strong ones and work through the stages of grief more quickly than women. In fact, the differences between men and women, and their
April | May 2004
grieving, was one of the topics assigned to my husband for a presentation at a meeting. He found that men as well as women must move through the stages of grief to recover from loss. But the time frame is never the same for parents. That can be a problem if couples are not aware that their feelings may not always be in harmony as they deal with grief. I can remember my husband telling me how it seemed people were more concerned with my recovery than his. Well wishers would always ask “How is your wife doing?” without a follow-up as to how he was handling the loss. Although I had gone through the pregnancy and delivery, he had lost a son. At our meeting, we tried to make couples aware of the different stages of grief so that as they moved through them, their relationship would strengthen as a result of the knowledge they had gained. It’s too easy to blame one another for a tragedy and go separate ways. Understanding each other’s feelings and communicating is so very important due to the increased incidence of divorce in bereaved couples (Sarnoff-Schiff, 1978).
Finding Closure for a Terrible Loss As one of the first members of the CARE group, my husband and I not only attended monthly meetings, we were assigned to couples who consented to have a home visit much like our friend Kay had done for us. This seemed to reinforce the reason we had become involved with the group, to help to restore one another. We participated in the home visits and monthly meetings for about five years. This seemed to strengthen our relationship as a couple as well. During that time, we were blessed with a healthy subsequent child. Our daughter took our journey to a new level. Sadly, there were so many newly bereaved parents that we thought it was time for a “changing of the guard.”
We still spend time with two of the couples we met at CARE, and our families spend vacations and holidays together. There is a bond that was created in supporting one another that will never end. But it would never have started had it not been for the support group. To this day my husband and I draw support from the couples that we have remained close to, for the pain of loss subsides, but the memory lasts forever. References Sarnoff-Schiff, H. (1978). The bereaved parent. New York: Viking. Promedica Hospital. (2003). CARE Support Group. Retrieved July 2003 from http:// www.promedica.org
Box 1.
Getting All the Facts • Books on Miscarriage, Stillbirth, Neonatal Death and Pregnancy Loss: www.mothers35plus.co.uk/ shopbooksMiscar.htm • Compassionate Friends: www.compassionatefriends.org • The MISS Foundation—Kids in Sympathy and Support— (KISS): www.misschildren.org/ kids/index.html • Medline Plus Health Information: www.nlm.nih.gov/ medlineplus/deathanddying. html • SIDS Network: www.sids-network.org
AWHONN Lifelines
175