Helping a Family Whose Baby Has Died from Sudden Infant Death Syndrome

What Can I Do?
The purpose of this web page is to provide helpful information for the relatives, friends and co-workers of a family that has experienced the sudden and unexpected death of an infant. Families are never prepared for the unexpected death of a healthy infant. Consequently, they will not be prepared for the intensity of the grief they may experience in response to that death.

In similar ways, other individuals close to the family are affected as they respond to the death, try to understand what has happened, and attempt to identify how they can help survivors. Each of us must cope with the death in his or her own way. And each of us must try to help in his or her own way. But there are some general guidelines that may be useful to those who seek help.

The information provided here about Sudden Infant Death Syndrome (SIDS) and about useful roles for helpers is intended to assist those who are helping a family that has been impacted by the sudden death of an infant. The aim is to guide helpers not to insist that each person do everything that is mentioned here. Do what is comfortable for you and helpful for the bereaved. Apply these general guidelines in a thoughtful way to each individual situation.

Helping a Family Whose Baby Has Died From SIDS
Friends, relatives, and coworkers can play an important role in helping a family that has experienced the sudden death of an infant. The most valuable thing that anyone can offer to such a family is caring presence. Often, there are no words that can capture the feelings of the moment. Merely “being with” the bereaved persons can provide the support and solace that they need.

As Judy Tatelbaum has written in The Courage to Grieve (p. 73), “We can help our grieving friend most by sitting near, holding a hand, giving a hug, passing a tissue, crying together, listening, sharing our feelings.

In other words, what the bereaved need most is our acknowledgement of their pain and sorrow. And we both must realize that we cannot erase that pain.” Here is a list of some specific suggestions that can provide support in a constructive way.

Immediate Helpful Hints

  • Be a friend! Parents may need some direction.
  • Call SIDS Resources, Inc., for information and support, for you as well as for the parents.
    • St. Louis (314) 822-2323
    • Toll-Free (800) 421-3511
    • Kansas City (816) 569-6956
    • Jefferson City (800) 421-3511
    • Springfield (800) 421-3511
  • When you call, ask for advice and request free pamphlets both for yourself and to pass on to other interested friends or family members. Accurate information about SIDS for those close to them can ease many burdens on the parents.
  • Offer to help notify family, friends, co-workers, and groups to which the parent might belong.
  • Be the telephone operator: answer calls, place calls, or screen calls. Allow the family to decide to whom they wish to speak.
  • Attend planned services: wake, visitation, or funeral. Just be there for the family and for yourself to share sorrow and offer support.
  • Offer to provide transportation during the time when preparations are being made for the funeral, to/from the ceremonies themselves, and for related activities.
  • Say a heartfelt “I’m sorry,” and “I’m here if you need anything.”
  • Run errands, make a list of items to discuss with the family when appropriate, i.e., go the to the grocery store, pharmacy, cleaners, gas station, or do laundry.
  • Offer to cancel scheduled appointments, classes, etc.
  • Be good listener. Don’t be afraid to say the baby’s name. Let the family talk about the baby.
  • Provide complete meals in disposable containers along with paper napkins and disposable utensils. Leave written instructions about how to prepare the food.
  • Offer to help care for the surviving children. Read age-appropriate books with the children and offer to take them on outings our scheduled activities.
  • Support the family in its own ways of grieving. Support parents in their decisions about funeral arrangements.
  • Do not rush parents in deciding what to do with the baby’s room.
  • Do not seek out things to say to try to make the family members feel “better,” happier, or thankful for what they still have. The family is aware of their “blessings,” but those factors are not central to their concerns right now. Comments of this sort only hurt and tend to discount the loss.
  • Keep your faith, beliefs, and cliches to yourself. If those beliefs help you, use them for your own comfort, but do not expect the family to appreciate or find solace in them.
  • Avoid trivial conversation; the weather, work, and gossip are of little interest to the bereaved family at this time. Remember that silence and mere presence can be helpful.
  • Offer to accompany you friend to appointments, and offer to drive so that parking will not be a hassle.
  • Offer to notify service providers with whom the family has frequent contact, e.g., dentist, pharmacy, a favorite restaurant, prenatal class instructor.
  • Offer to notify others involved with activities of siblings, e.g., school, sports.
  • Offer to pick up pictures that were left for developing, call the photographer if the portraits were recently done and ask if the negatives might be given to the family. Offer to order an enlargement of a favorite picture of the baby. If portraits were done by a large company that specializes in inexpensive picture packages call ahead to explain the death. Ask the company to donate the picture set to the family.
  • If you have a baby, ask the family if they want your baby to be present or not at funeral services and other activities. Everyone is different in this respect and their desires may change from one visit to another. Do not automatically assume either that the presence of the baby “hurts too much” or that “they have to face it someday and the sooner the better.”
  • Maintain contact with the bereaved family, even if they do not seem to be receptive to calls or visits. Don’t feel rejected if initial offers of help are not accepted.
  • Offer a gift certificate for a therapeutic massage.

Memorial Suggestions

  • Design a commemorative activity in memory of the baby, such as planting a tree or garden.
  • Make a donation to a food pantry or child care center.
  • Give presents you would have bought the baby to a needy child.
  • Make a donation for a religious observance or other charitable cause based on the family’s preference.
  • Make a contribution to SIDS Resources, Inc., in memory of the baby on birthdays and death anniversaries.

Long-Term Helpful Hints
Learn accurate information about Sudden Infant Death Syndrome. If you have questions or issues, ask an authority. Do not approach the family with your theories and research questions. In that way, you may unwittingly be implying that had they been aware of your information, their child might still be alive. When you hear or read of a new breakthrough in the cause of SIDS,” contact your local SIDS resource center for an accurate interpretation of the information before you call the family “to share the good news.” Most often, these media announcements are misleading to the general public and devastating to the families who may assume they should have been more aware of research that could have prevented the death of their child.

  • Remember that the pain and hurt are present months later. Expect and accept bad days, crying jags, and anger. Do not ask: “Are you okay?” “Are you doing better?” “Have you gone to any of the meetings?” These imply that the bereaved person should be better and is not doing everything that you think they should be doing.
  • Accept and validate the feelings of anger, the comments of unfairness, the frustration expressed because of a lack of control.
  • Accept mourning as a process which is highly individualized, takes time and energy, and will always be a part of the family’s ongoing life.
  • Remember the holidays-all of them! Holidays, which do not have much significance for some, may be very difficult for families to face.
  • Acknowledge anniversary dates, such as birthdays, the date of the infant’s death, and, for the first year, the monthly date of the infant’s death, as well as the date of his or her birth.
  • Acknowledge other “first” days as they occur, such as the time at which the child would have entered kindergarten, first grade, and high school.
  • Be aware of places where you might see many babies when planning outings with the bereaved family. They can be painful.
  • Visit the cemetery and offer to accompany the bereaved parents on visits to the cemetery if they wish to go. Take flowers to the parents when they are taking flowers to the grave. Stop by the cemetery yourself and leave flowers or dust the markers. Tell the family that you were there.
  • Offer to include the family in special parties, but allow them to decide if they wish to attend. Baby showers may be especially difficult for bereaved mothers to attend.
  • If or when a future pregnancy is announced, do not assume that it will alleviate the family’s grief. Do not be surprised if the grief seems magnified. Fears of another loss may overshadow the positive feelings, even though the pregnancy was planned.
  • With the arrival of a new baby, anticipate that the family will still need to speak of the deceased infant, will still need recognition of anniversary dates, will compare this infant to the one who died, and will still have some very sad times in their lives.
  • And when you make a mistake, do something wrong, or do not do as well as you would have liked, keep in mind that we are all human. Apologize if that is appropriate or share your feelings with the family. Ask what they need. Be prepared to help if you offer. Do not stay away!
  • Avoid statements such as: “You appear so strong” or “I don’t know how you do it”. To a bereaved parent, these statements may imply “you didn’t love your child”.

Suggestions for Co-Workers
Most employers will initially be understanding of a family whose infant has died from SIDS, but eventually they are faced with a business or organization that must continue to operate. Co-workers are also faced with these dual issues surrounding the aftermath of a SIDS death. Their compassion for the family may be complicated by the need for the bereaved co-worker to carry his or her share of the work.

Uncomfortable times face co-workers during coffee break or on-the-job conversations that deal with topics which may seem trivial to a bereaved family members, such as the weather, a child’s poor grades, scratches on care doors, or lost keys. Behaviors, which might be exhibited by a bereaved employee, include difficulty in making decisions, inability to concentrate, disinterest in job-related details, excessive work hours, frustration and irritability, depression and mood swings, or marital and family problems. It may take a long time to overcome such behaviors.

The following may provide some assistance for co-workers in coping with the work situation and being supportive to the bereaved person:

  • Request Literatures from SIDS Resources, Inc., which can be shared with co-workers.
  • Contact SIDS Resources, Inc., to arrange an educational presentation for co-workers in order to provide information about SIDS and suggestions for being supportive to the bereaved family.
  • Encourage co-workers to be comfortable with conversations related to the infant and the death.
  • Remind co-workers to allow the family to make their own decisions about participating in work-related special functions, such as holiday parties or summer picnics.
  • Suggest that the bereaved person’s desk and belongings are left as is; do not put away pictures or mementos of the infant unless specifically asked to do so.
  • Offer to inform business associates and co-workers who may not otherwise hear of the infant’s death.
  • Encourage good communication that will allow the bereaved employee to make his or her own decisions; avoid one-sided decisions made “because I thought that would be best or easiest for you.”

Facts About SIDS
Sudden Infant Death Syndrome (SIDS), formerly called “Crib Death” or “Cot Death,” is the leading cause of death in infancy between one month and one year of age. In the United States alone, SIDS accounts for approximately 3000-4000 infant deaths annually. SIDS is a centuries old, worldwide enigma and remains as one of the last great unsolved childhood catastrophes. Even though research is ongoing locally, nationally, and internationally, there is currently no detection, treatment, or prevention for SIDS.

Although we cannot predict or prevent SIDS, we do know that babies die primarily in the first year of life. Most of these deaths occur during the period from two to four months of age, and during a period of sleep. SIDS deaths occur more commonly, but not exclusively, during the cold weather months.

SIDS is neither contagious nor hereditary. It is not caused by choking, abuse, or neglect. SIDS can strike a family of any race, religion or ethnic group.

Misinformation About SIDS
Because of the enigmatic nature of SIDS, there are many unfortunate misconceptions with which friends or relatives may have to contend. Frequently parents have shared their feelings of hurt and anger about things that well-meaning but misinformed people have said to them. It may be helpful for you to be aware of some of the following insensitive comments so that you will be prepared to support the SIDS family, as well as to help combat misinformation.

It is important to know that the following do not cause SIDS:

  • Not “loving the baby enough”
  • Not having a “good marriage”
  • Not “wanting” the baby
  • Not having a baby of the “desired” sex
  • Being a working parent and/or leaving the baby is someone else’s care
  • Being a “bad parent”
  • Being a single parent
  • Having either a Caesarean section or vaginal birth
  • The baby having colic
  • Dropping the baby
  • Either breast- or bottle-feeding
  • A cat smothering the baby
  • DPT shots or other immunizations
  • God’s revenge for “misdeeds”

Final Thoughts
According to Judy Tatelbaum (The Courage to Grieve, p. 74), “What would I like done for me under these circumstances?”

Another good rule is to sense-or ask directly about-the mourner’s needs. For example, if the bereaved needs to talk, then by all means we should respond. If the other wants quiet, we should be quiet too, and not rush to fill the silence. (It is also important to remember that a bereaved parent’s needs may change from one day to the next).

And we must remember to focus on giving, not on taking. The bereaved person needs much help and rarely has much to give in return. If we are in need ourselves, we should stay away, so we won’t place an additional strain on the mourner.”

 References

  • Marquez, S. D. (1991). “Grandparents, Extended Family Members and Other Significant Persons.” In C.A. Corr, H. Fuller, C.A. Barnickol, & D.M. Corr, Sudden Infant Death Syndrome: Who Can Help and How (pp. 101-120), New York: Springer.
  • Tatelbaum, J. (1980). The Courage to Grieve. New York: Lippincott & Crowell.

Acknowledgements
This series was initially funded by contributions from the following sponsors:

  • The Koenig Family, in Memory of Louis Edward Koenig
  • United Way of Greater St. Louis, Venture Grant Fund
  • The York Children’s Foundation
  • McDonnell Douglas Employees’ Community Fund
  • Mallinckrodt Medical

About the SIDS Resources’ Building Blocks Series
SIDS Resources works with families, friends, and child-care providers to offer support and to supply current, pertinent, medical information about SIDS. Ongoing support is available to families and friends through individual counseling, support group sessions, home visits, peer contacts, and research update meetings. SIDS Resources also offers education, support, and resources for professionals who serve individuals impacted by SIDS and for the community at large.

The SIDS Building Blocks Series is an informative collection of booklets designed to focus on the needs of individuals who have experienced the tragedy of SIDS and professionals who may encounter those who have experienced SIDS.

Select from the categories below to go directly to the relevant support information:

 SIDS Building Blocks Task Force Members

  • Charles A. Corr, Ph.D., Chairperson
  • Lisa Baum, Funeral Director
  • Jan Boesch, SIDS Parent
  • Richelle S. Clark, RN, PNP, MHA
  • Pat Codden, RN, MSN
  • Lauretta Coleman, SIDS Parent
  • William Ferzacca, MA
  • Ronald Jones, Funeral Director
  • Robert Knight, MSW
  • Robert L. Lewis, Ph.D.
  • Jean McLane, SIDS Parent
  • Dorothea Mostello, MD, SIDS Parent
  • Pamela E. Paffett, Child-Care Resource and Referral Specialist
  • Rena Ridenour, RN, MSN
  • Claudia Sarber, SIDS Grandparent
  • Dave Sarber, SIDS Parent
  • Bridgette Sargent, Child-Care Provider
  • Sue Smorodin, SIDS Parent
  • Sue Treiffeisen, M.Ed.
  • Debbie VanRyn, SIDS Parent

 

Copyright 1993 SIDS Resources, Inc.