Dear Caregiver or Loved One,
Enclosed is a brochure and other information regarding H.A.N.D., a non-profit, peer support group for parents whose babies have died at any time from conception through late infancy. For almost twenty years H.A.N.D. (Houston's Aid in Neonatal Death) has served Houston area families in their time of need. We help bereaved parents deal with their grief, as well as assisting them in understanding and coping with changes in their marital and other relationships and helping them find their "new normal."
You are in a unique position to provide the kind of positive intervention that can start parents along the road toward a healthy resolution of the loss. Both women and men often regard their feelings about the events immediately surrounding their loss as among the most hurtful and difficult to resolve. However, with support and acknowledgement of their feelings, these events can provide them with memories which bring them comfort and peace, knowing they did all they could to bond with and simultaneously say goodbye to their baby.
As the loss is rarely anticipated, they will need your help to become aware of, and to understand, all of the options that are available to them at the time of their loss. We have enclosed information designed to guide your interaction with a parent that has experienced a perinatal loss. Please feel free to copy and share it with other people, offices, hospital staff, or with anyone else for whom you feel it might be helpful. H.A.N.D. also welcomes the opportunity to provide additional training or in-service education.
We have also enclosed a packet of information. Many parents participating in H.A.N.D. have expressed a wish that more information had been given to them at the time of their loss to assist them with the many decisions and feelings they faced. Please feel free to copy the handouts and share them with doctor's offices or anyone you feel it would assist.
H.A.N.D. meets the 2nd Sunday of each month from 6:30-8:30pm at Chapelwood United Methodist Church in Houston. (although the church provides us space, we are not affiliated with it.) A separate group is provided for couples that are dealing with a subsequent pregnancy following a loss. For information about meetings, times, and locations please call (832) 752-1919 at any time.
Please encourage the parent to call H.A.N.D.'s telephone support line (832-752-1919) and to attend our monthly meetings. Because H.A.N.D. is totally run by volunteer parents it is necessary for the support line to be answered by a machine. This also helps to ensure that when talking with newly bereaved parents they will have our complete attention. All calls are returned within 24 hours. If you would like more brochures, or if you have questions or suggestions, please call H.A.N.D. at (832) 752.1919.
H.A.N.D. Meeting Locations and Times
(H.A.N.D. meetings are open to parents, adult family members, and friends.)
2nd Sunday of each month: 6:30 to 8:30 pm
Chapelwood United Methodist Church
11140 Greenbay St.
Houston, Texas 77024
Chapelwood United Methodist Church is located in Piney Point Village the Memorial area.
Directions: Take I-10 to the Bingle/Voss exit. Turn left on Voss, right on Memorial, and right on Greenbay. The church will be on your right; proceed through the side parking lot to the rear of the building. Our meeting is in room W103, in the Williams building.
H.A.N.D. Yearly Events
Remembrance Ceremony: Each year in October we hold a remembrance ceremony to honor all of our babies who have died. Information on this ceremony will be mailed, or emailed, to all that have registered with H.A.N.D. and can also be found on the web site, www.hand.net.
Candle lighting: For our meetings held in December, we hold a special candle lighting service as a children's memorial service at the holiday times.
Mothers & Fathers Day: On Mothers & Fathers Day each year a special meeting is held to help parents through what can be a very difficult day. Please see the web site to find the meeting that falls on these days.
To confirm meeting locations, special events, or for more information please visit the H.A.N.D. website, www.hand.net, or call the help line at 832-752-1919 *****
PERINATAL LOSS: A CONTEXT FOR CARE PROVIDERS
Grief occurs following perinatal loss because most parents develop an attachment to the baby long before he or she is born. Even with a very early miscarriage or ectopic pregnancy, parents often grieve not only the loss of the pregnancy and the baby, but also the loss of their hopes dreams, and fantasies concerning the child. When interacting with the parents, remember that they have experienced the death of their baby, not just a medical event that happened inside the woman's uterus.
Parents usually pass through several phases of grief as they work toward resolution. During their hospital stay, they are most likely to be in the initial phase when expressions of shock, denial, confusion, disorganization, and sometimes anger and hostility, are common. The active phases of the grief process are likely to continue for six months to two years, by which time resolution is usually achieved if the grieving process has been a healthy one.
During the short period of crisis following a stressful event such as a pregnancy loss, people are more susceptible to change, in the direction of either improved functioning or of deterioration in their level of functioning. Intervention during this period of crisis is therefore crucial to guiding the parents toward a positive resolution of their grief. It is important for parents to know which physical and emotional symptoms to anticipate so that they will not think they are "going crazy," and so that they can prepare themselves to cope with these experiences. Physical symptoms may include sighing, tightness in the throat and chest, fatigue, exhaustion, changes in appetite and sleep patterns, sexual problems, restlessness, decreased concentration, and "aching arms." Emotional symptoms may include confusion, anger, feelings of disappointment and failure, guilt, isolation (feeling isolated by others and/or isolating self from others), jealousy of pregnant women or women with babies, preoccupation with thoughts of the baby, vivid dreams or nightmares about the baby, a change in daily activities, hostility, irritability, crying spells, depression, lack of motivation, feeling empty and lonely, phantom cries and intrauterine "kicking," fears of "going crazy," decreased self-esteem, marital problems, and religious crisis.
In order to work effectively with grieving parents, you need to become aware of your own feelings of grief, failure, anger, helplessness, depression, and self-blame regarding the loss. Do not hesitate to seek support from fellow staff members and friends. You must meet your own needs in order to be able to meet those of the parent experiencing the loss.
GUIDELINES FOR POSITIVE INTERVENTION BY CAREGIVERS AND FAMILY MEMBERS
1. It is crucial that the parents confront the painful reality of the
death of their baby. Grieving parents cannot say goodbye to their baby
until they have had the chance to say hello. They need to complete the
interrupted process of attachment so that they can move on to detaching
from the baby. You can help them do this in several ways:
A. Encourage the parents (and grandparents, if available) to see, hold, and touch the baby. This is the single most constructive act in facilitating the grief process. If they seem hesitant at first, make the offer at a later time (we have never had a parent in H.A.N.D. regret having seen the baby, even when there were severe abnormalities, but many have regretted that they did not). Before they see the baby, prepare them for what to expect, what the baby will look and feel like. Cover the baby with a blanket to hide deformities, but encourage the parents to explore the baby (no deformity is as bad as the parents' fantasies). Point out the positive and/or familial characteristics. Encourage them to spend as much time as they would like with their baby, as this is the only time they will ever have with their baby.
B. Tell the parents what you remember about the baby, the labor, and the delivery, and encourage them to write down these as well as their own memories.
C. Encourage the parents to name the baby, and call him or her by name.
D. Take pictures or encourage the parents to do so. Include one or both of them holding the baby. Offer a birth and/or death certificate, footprints, a lock of hair, the baby's blanket, the clothes the baby wore in the hospital, x-ray or ultrasound pictures, hospital bracelet, plaster hand/foot print, or any other remembrances of the baby.
E. Do not sedate the mother. It increases confusion, prevents her from confronting reality, and leaves her with few memories of the experience.
2. The parents are likely to feel a sense of helplessness; that their
lives are out of control. You can help give them a sense of control by
providing options and by pointing out the pros and cons of the choices
to be made where appropriate. Especially if the patient is still in shock,
you may need to present the choices more than once.
A. If the baby has died in utero, give the mother some choice as to when and how the baby will be delivered, if possible.
B. Whenever possible, allow the mother to decide her room placement. Some mothers prefer to remain near other mothers and their babies in order to reaffirm their claim to motherhood, and may interpret automatic placement elsewhere as "punishment" for failure to deliver a live-born child. Others may find it too painful to be exposed to the joy of new mothers and the sight and sounds of the babies.
C. Present options regarding religious rites, disposition of the body, funeral, or memorial service. If there is to be a funeral, it should be postponed until the mother can attend, or she should be given a temporary pass to leave the hospital. Some parents may want to bathe the baby's body and dress him or her in clothing they have purchased, or place a toy, note or other gift in the casket. Encourage them to take pictures at the funeral.
D. Discuss the need for an autopsy and/or genetic work-up and counseling.
Communicate the results to the parents as soon as possible and in language
they understand. Give them as much information as you can about the baby
and the cause of death, but do not be afraid to say that often there is
E. Encourage the parents to decide together what to do with nursery things. Many families close the room and defer decisions until later. Others need to sit in the room from the beginning.
3. Often, one of the parents' greatest needs is to talk about the baby and the loss. Repeated retelling of the experience helps them to master it. Be available to listen without feeling you have to do something or to say anything. Ideally, there should be specific care plans for staff to spend time with the parents.
4. "If you can't cure, care." You cannot make the hurt go away, but you can let the parents know you care about them and their baby. Do not be afraid to let your emotions show, to cry, and to touch. Long after the parents' grief has passed, they will remember the kind of care they received at the time of their baby's death.
5. Provide grief education so parents will know what to expect. Describe the physical and emotional symptoms they may experience, and reassure them that these are normal reactions to loss. Point out the differences in the way men and women may express their grief and encourage them to share their thoughts and feelings with each other. Be aware of the parent's past history of loss, e.g., previous infertility, miscarriage, ectopic pregnancy, stillbirth, SIDS. If the mother has had a previous elective abortion or placed a baby for adoption, her feelings of guilt may be especially strong. The current loss may bring up unresolved feelings regarding previous losses and she may find herself grieving them anew. On the positive side, she can also draw upon coping mechanisms that were successful in dealing with these losses.
6. Help the parents survey their support system and get them thinking about how they can make sure of it to help them cope with their grief. Make them aware, however, that they may not always get the kind of supportive responses they would like from others because of their lack of knowledge about how to react to this particular type of loss, and help them decide in advance how they will handle these reactions.
7. Do not forget about the father. Ask him how he is. Allow unrestricted visiting/rooming-in when possible. Ask him about his feelings and encourage his expressions of grief. Let him know he does not have to "be strong" for his wife. Give him an opportunity to express his concerns about his wife's health and emotional condition. (This may be expressed as anger directed toward others. Do not personalize this anger. It is his way of expressing the grief and helplessness he feels about his baby's death and his concern for his wife).
8. Acknowledge the grandparents' grief too. Allow them to support the parents, but discourage them from interfering in the parents' decision-making.
9. Prepare the parents to discuss the loss with their other children, if there are any.
10. Discuss postponement of a subsequent pregnancy until both body and mind have had time to heal. Some parents may want to rush into a subsequent pregnancy to distract themselves from their current grief, and the subsequent child may be in danger of becoming a "replacement child" for the one who has died. Others may be so afraid to try again that they may request sterilization, only to regret it later once their grief has resolved.
11. Encourage the parents to discuss their thoughts and feelings about the loss during follow-up visits by using open-ended questions. For example, you might ask "What has been the most difficult since your baby's death?" They may be hesitant to talk and may need your "permission" to discuss their feelings.
12. If a subsequent pregnancy occurs, the parents are more likely to need additional support and more frequent prenatal checkups to reassure them that their new baby is progressing well.
WISH LIST FOR BEREAVED PARENTS
Every time a group of bereaved parents are together you hear comments such as, "I wish my child hadn't died," or " I wish I had him back." Those wishes, unfortunately, can never come true. Another wish is "I wish my friends (or church, or neighbors, or relatives) understood what I am going through and were more supportive." This is a wish that has some possibility of coming true if we are able to be honest and assertive with the people around us. What do we wish others understood about the loss of our child? Here is a partial list of such wishes:
I wish you would not be afraid to speak my child's name. May child lived and was important and I need to hear his name.
If I cry or get emotional if we talk about my child, I wish you knew that it isn't because you have hurt me; the fact that my child died caused my tears. You have allowed me to cry and I thank you. Crying and emotional outbursts are healing.
I wish you wouldn't "kill" my child again by removing from your home his pictures, artwork, or other remembrances.
I will have emotional highs and lows, ups and downs. I wish you wouldn't think that if I have a good day my grief is all over, or that if I have a bad day I need psychiatric counseling.
I wish you knew that the death of a child is different from other losses and must be viewed separately. It is the ultimate tragedy and I wish you wouldn't compare it to your loss of a parent, a spouse, or a pet.
Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me.
I wish you knew all of the "crazy" grief reactions that I am having are, in fact, very normal. Depression, anger, frustration, hopelessness, and the questioning of values and beliefs are to be expected following the death of a child. This will not go away overnight.
I wish you wouldn't expect my grief to be over in six months. The first few years are going to be exceedingly traumatic for us. As with alcoholics, I will never be "cured" or a "former bereaved parent," but will forever more be a "recovering" one.
I wish you understood the physical reactions to grief. I may gain weight or lose weight, sleep all the time or not at all, develop a host of illnesses and be accident-prone, all of which may be related to my grief.
Our child's birthday, the anniversary of his death, and holidays are terrible times for us. I wish you could tell us that you are thinking about our child on these days, and if we get quiet and withdrawn, just know that we are thinking about our child and don't try to coerce us into being cheerful.
It is normal and good that most of us re-examine our faith, values, and beliefs after losing a child. We will question things we have been taught all our lives and hopefully come to some new understanding with our God. I wish you would let me tangle with my religion without making me feel guilty.
The only way I can get through this grief is to experience it. I have to hurt before I can heal.
I wish you understood that grief changes people. I am not the same person I was before my child died and I never will be that person again. If you keep waiting for me to "get back to my old self," you will stay frustrated. I am a new creature with new thoughts, dreams, aspirations, values, and beliefs. Please try to get to know me -- maybe you'll like me still.
I wish you would not be afraid to speak his name and tell me when you are thinking about my child. This will not bring up bad memories.
*****Instead of sitting around waiting for our wishes to come true, we have an obligation to teach people some of the things we have learned about our grief. We can teach these lessons with great kindness, believing that people have good intentions and want to do what is right, but just don't know what to do with us.*****
The following books have been recommended by families who have experienced the death of a baby. Often reading about your feelings and the grief process is helpful in understanding them. These books are available at most major bookstores and libraries. Another resource for finding books about perinatal bereavement is to go to the website Amazon.com and search their book section using the key words perinatal bereavement or grief; there are often sample selections from more recently published books such as the table of contents, index, and portions of chapters that may help provide a sense of whether a particular book might be helpful to you or a family member.
PERINATAL DEATH AND GRIEF
Death of a Dream. Ewy, Donna and Roger. 1984.
Empty Arms. Ilse, Sherokee. 1982.
Help, Comfort, and Hope After Losing Your Baby in Pregnancy or the First Year. Lathrop, Hannah. 1997.
When a Baby Dies. Limbo, Rana and Wheeler, Sara Rich. 1998
When Hello Means Goodbye. Schwiebert, Pat and Kirk, Paul. 1981.
When Pregnancy Fails: Families Coping with Miscarriage, Stillbirth, and Infant Death. Borg, Susan and Lasker, Judith. 1981. Revised 1989.
Coping with a Miscarriage: Why it Happens and How to Deal with its Impact on You and Your Family. Pizer, Hank and Palinski, Chirstine O'Brien. 1980.
Miscarriage -- A Shattered Dream. Ilse, Sherokee and Burns, Linda Hammer. 1985.
An Empty Cradle, a Full Heart: Reflections for Mothers and Fathers after Miscarriage, Stillbirth, or Infant Death. Lasfer, Christine O'Keeffe, and Tickle, Phyllis. 1998.
When Bad Things Happen to Good People. Kusher, Harold. 1981.
Where is God When it Hurts. Yancey, Philip. 1977.
CHILDREN AND DEATH -- HELP FOR SIBLINGS
For Those Who Live: Helping Children Cope with the Death of a Brother or Sister. La Tour, Kathy. 1983.
Lifetime: The Beautiful Way to Explain Death to Children. Mellonie, Bryan and Ingpen, Robert. 1983.
Tell Me, Papa. Johnson, Dr. Marvin and Joy. 1984.
The Fall of Freddie the Leaf: A Story for All Ages. Buscaglia, Leo. 1982.
Thumpy's Story. Dodge, Nancy C. 1984.
Timothy Duck -- The Story of the Death of a Friend. Blackburn, Lynn Bennett. 1987.
Where's Jess? Johnson, Joy and Mary. 1982.
PREGNANCY AFTER A LOSS
Pregnancy after a Loss: A Guide to Pregnancy after a Miscarriage, Stillbirth, or Infant Death. Lanham, Carol Cirulli. 1999.
Still to Be Born. Schwiebert, Pat and Kirk, Paul. 1986.
Trying Again: A Guide to Pregnancy After Miscarriage, Stillbirth, and Infant Loss. Douglas, Ann, et al. 1999.
WRITTEN/EDITED BY BEREAVED PARENTS
A Broken Heart Still Beats After Your Child Dies. Edited by Anne McCracken and Mary Semel. 1998
A Grief Observed. Lewis, C.S., 1961 (spousal grief, but very resonant with loss of a child)
Song for Sarah-A Young Mother's Journey Through Grief and Beyond. D'Arcy Paula, 1979, revised 1995.
The Bereaved Parent. Schiff, Harriet Sarnoff. 1977.
BEREAVEMENT WEBSITESMiscarriage, stillbirth, and infant loss support group at Babycenter.com
Share Pregnancy and Infant Loss Support
A Place To Remember
The MISS Foundation
Subsequent Pregnancy After a Loss Support