The Sudden Death of a Child

Pediatricians are in a unique position to assist parents who are devastated by the sudden, unexpected death of a child. These parents have not had time to prepare themselves for their child’s illness or death and will greatly benefit from a pediatrician’s skilled intervention as well as information on the grief process.
BACKGROUND

The sudden, unexpected death of a child can be overwhelming for a family, and the intense emotional responses have the possibility of disrupting not only family dynamics, but may even cause parents to sever their marriage relationship. Parents who experience the sudden death of a child suffer in many unique ways.

A child is not supposed to precede parents in death, and thus a child’s death upsets the normal order of life.

The parents have no opportunity to prepare themselves, their other children, relatives, and friends.

The parents often experience guilt regarding what they should have done to prevent the death: “I should have driven my daughter to school rather than letting her walk,” if she was hit by a car while walking to school.

The parents find it difficult to attend to the needs of their other children, thus increasing their guilt.

Because of these stresses, marriage relationships often suffer after the death of a child. Approximately 16% of all marriages in this situation end in divorce. However, some parents find they develop stronger bonds when this challenge is faced together.

PROMOTING STRONG, STABLE FAMILIES
The goal of pediatricians should be to help facilitate and monitor appropriate grieving for all members of the family, while working to maintain the cohesiveness of the family and strengthen the marriage.
SCIENTIFIC RESEARCH

Percentage of marriages that end in divorce as a result of grief from the death of a child

In 1977 a reporter chronicled her grief following the death of her son, and in her book, she estimated that up to 90% of all marriages that experienced the death of a child ended in divorce. This was only an estimate, but quickly became a number that was frequently repeated. (1)

In a literature review in 1998, Dr. Reiko Schwab at Old Dominion University found much lower divorce rates, less than 20%. (2)

The Compassionate Friends commissioned a study in 2006 evaluating divorce rates after the death of a child, and the authors found only 9% of respondents divorced after their child’s death. Twenty-four percent of the remaining parents had considered divorce but remained married. (3)

Four factors appear to contribute to marital stress: differences in grieving style, prior quality of the marital relationship, circumstances surrounding the child’s death, and parental displacement of anger and blame. (4)

Parents’ reactions to the death of a child parallel the stages of grief described by Dr. Elizabeth Kubler-Ross: denial, anger, bargaining, depression, and acceptance. (5)

Four factors appear to contribute to marital stress: differences in grieving style, prior quality of the marital relationship, circumstances surrounding the child’s death, and parental displacement of anger and blame. (4)

Parents’ reactions to the death of a child parallel the stages of grief described by Dr. Elizabeth Kubler-Ross: denial, anger, bargaining, depression, and acceptance. (5)

Four factors appear to contribute to marital stress: differences in grieving style, prior quality of the marital relationship, circumstances surrounding the child’s death, and parental displacement of anger and blame. (4)

Parents’ reactions to the death of a child parallel the stages of grief described by Dr. Elizabeth Kubler-Ross: denial, anger, bargaining, depression, and acceptance. (5)

Unfortunately, parents experiencing the sudden death of a child may be forced to enter the grief process at any one of these stages and may need to process their grief without the benefit of time provided to parents whose child has suffered a chronic illness prior to death.

Parents who have a child with a chronic illness have had time to:

Develop a support system through trusting relationships with medical providers, nurses, and hospital staff.

Learn about their child’s illness and educate themselves on treatment possibilities and advocate for their child.

Inform their family, relatives, and friends about the child’s illness so these people can be supportive when the child dies.

Formulate or reevaluate their philosophical and religious beliefs, specifically regarding life after death, and possibly communicate those beliefs to their child.

Alter their home environment. (We have all seen how toys, books, and clothes come into the hospital room of a child with a chronic illness, changing the appearance of the child’s bedroom even prior to the child’s death.)

Determine how they will say goodbye to their child and whether they will arrange for special memories or experiences.

Decide how the child’s life will be celebrated in the memorial service.

 

Change their hopes and dreams for their child.

Physicians and health care providers have the opportunity to intervene in the emergency room to facilitate a compassionate approach and offer assistance with the family’s needs. They can help the family acknowledge the beginning of the grief process and provide helpful resources.

THE CONVERSATION
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This timing of the conversation is dependent on the stage of illness of the child. 
This conversation involves the parents of the child.

The key to assisting parents begins with offering them the gift of “time,” even if this is artificially created. As developmental pediatrician Abraham Bergman stated, “I use to decry the practice of placing children with obviously mortal head injuries on respirators for one or two days. I have now come to feel that even a respite of 12 hours before death is pronounced gives the parents some opportunities to prepare for the dread event, a time which seems to assist their later adjustment.” (6)

A window of time does exist in the emergency room in almost every case of sudden death and an attentive pediatrician (or emergency physician) must take advantage of this opportunity.

 “Creating time” begins with finding a quiet room for the family, preferably one with coffee available (and a telephone, if the family does not have a cell phone). It is important to know your hospital and emergency room setting so you have a room chosen prior to needing it.

A physician who is not medically responsible for the child or not running the code should be selected to be the primary spokesperson for the medical team. This helps the family develop a trusting relationship with the health care professional in a short period of time.

This physician “shuttles” between the patient and the family, using the time while resuscitation efforts are continuing to help prepare the parents for what is to come.

 

Saying “Things look serious” can progress to “Your child is critically ill.”

Worsening status is conveyed by phrases like,“The situation does not look good.” “We are trying everything we can, but we are not sure we will be able to help.” “Her heart is not responding to the drugs we are using” and finally, “We don’t have much hope.”

This progression allows the family time to begin processing the reality of the child’s impending death.

While the above is happening, the physician can also offer to call relatives, friends, and clergy for their support. People are much less likely to aggressively (and sometimes accusingly) question the family for information about what happened when a medical professional calls and asks them to come support the family.

When the resuscitation code is terminated, the spokesperson has the responsibility to inform the family of the child’s death, but also to help give them the opportunity to say goodbye.

 

If the code room needs to be cleaned quickly for other patients, it may be necessary to bring the child’s body to where the family has been meeting or to find another available room where the parents can spend any amount of time they desire with their child.

Before the parents view their child, the child should be cleaned of all blood and stains and all tubes that can legally be removed should be taken out. In most states, the sudden death of a child within 24 hours of hospital admission necessitates an autopsy. Nonessential peripheral intravenous lines and nasogastric tubes may usually be removed. Essential central lines, intraosseous lines, and endotracheal tubes usually must remain in place. Wrap the child in a clean, warm blanket and be sure to cover the child’s toes as parents often express concern that the child will become cold when the toes are not covered.

Prepare the parents for the child’s appearance. Describe what tubes will be in place and what color changes the parents might notice.

While the family is spending time with their child, the physician can notify the coroner or medical examiner. In addition, the physician can encourage the code team to take time to debrief and support each other.

When the family is ready to leave the emergency room, the physician needs to take time to convey information to the parents to explain what happened.

 

Parents won’t retain much of what they hear, but they need to hear it.

Having close friends or relatives with the parents during this discussion will be helpful so they can reiterate what the physician said.

The parents need to hear: The presumed cause of death. Even stating the child died of Sudden Infant Death Syndrome will help the parents start their grieving process and often allow them to access appropriate resources. That everything possible was done to help their child. Describe specifically how machines were used to breathe for the child while drugs were administered to help the child’s heart. That their child’s death must be investigated by an autopsy—if this is true—as funeral arrangements must take the autopsy into account. What local and national support groups are available. Information on grieving.

Grief information

Although the parents won’t be able to hear much information regarding the grief process, it is usually helpful to at least mention that men and women tend to grieve differently.

Men tend to immerse themselves in work. They feel they were inadequate in the protection of their families and try to work more diligently to make up for that.

Women tend to experience physical changes, such as the inability to eat, sleep, or care for other children.

Provide parents with information on how to assist their living children with their grief.

Express your own emotions.

Don’t fear demonstrating your sadness and grief by crying with the family.

Your tears are a powerful statement to the family that you do not blame them for their child’s death.

Families do not remember your words—they remember what you do.

Provide follow-up care.

Call the family the next day to see if they need assistance with funeral arrangements.

Call within one week with preliminary autopsy results.

Call within several weeks to assess the grieving process.

Call at six months to assess the progression of the grieving process: Parents and children should be able to return to some normal activities. The inability to resume some activities is cause for referral.

Consider attending the funeral.

 

infoYour actions demonstrate your compassion more than your words.

REFERENCES

1.     Schiff H. Bereavement and marriage. In: The Bereaved Parent. New York, NY: Crown Publishers; 1977:57-82, https://www.amazon.com/Bereaved-Parent-Harriet-Sarnoff-Schiff/dp/0140050434.

2.      Schwab R. A child’s death and divorce: dispelling the myth. Death Stud. 1998;22(5):445-468.

3.      Survey, “Bereaved Parents and Divorce,” by Dr. Mark Hardt and Dannette Caroll of Billings, MT, as reported in Bereavement Magazine, Sept./Oct. 1999.

4.      Murphy SA, Johnson LC, Lohan J. Challenging the myths about parents’ adjustment after the sudden, violent death of a child. J Nurs Scholarship. 2003;35(4):359-364.

5.      Kubler-Ross E. On Death and Dying—What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families. New York, NY: Scribner; 1997, https://www.amazon.com/Death-Dying-Doctors-Nurses-Families/dp/0415463998.

6.      Bergman A. Psychological aspects of sudden unexpected death in infants and children. Pediatr Clin N Am. 1974;21:115.

RESOURCES