Information for Parents - Introduction
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 Street
Houston, Texas 77024
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.
"Reaching out when things go wrong"
Support for parents coping with miscarriage, stillbirth, and infant death
The loss of a baby during pregnancy or soon after birth arouses intense emotions. These emotions can be so overwhelming that you may have difficulty organizing thoughts and feelings. You, your family, and your friends may feel a great deal of stress, anxiety, fear, anger, and confusion. Some families feel isolated and find it difficult to talk to even those with whom they are close.
H.A.N.D. (Houston's Aid in Neonatal Death) is a local, peer-run support group that brings together parents who are experiencing similar grief, worries, and fears. Our regular meetings offer an opportunity to ask questions, share answers, discuss feelings, and find support from others. There are monthly meetings held at three locations in the Houston area, each on a different Sunday. You are welcome and encouraged to attend any of the meetings, along with partners, other family members, or concerned friends. The specific meeting locations and times are listed on a separate sheet included in this information packet.
The materials included in this packet address some of the most common aspects of the grieving process and will hopefully provide you with a starting point as you address your own feelings and needs, as well of those of others. Although this is a time when you should be able to focus only on your feelings and those of your partner, others such as surviving children, grandparents, and anyone who would like to be supportive but does not know what to say or how to help will look to you for guidance. Some of the materials are specifically intended to help others help you, because in the beginning, you may not know what to ask of them or how to ask. Feel free to make copies of particular selections to share with family, friends, and co-workers.
Please accept our sincere condolences on the loss of your baby. No matter the point in pregnancy or in the period following birth, there is no time or circumstance under which is it okay to lose a child. Your loss will always be unique precisely because it is yours, but please know that you are not alone; the parents of H.A.N.D. have journeyed down a similar path of grief and are available to support you on your own journey to healing.
At this time of loss, you may find yourself faced with a number of difficult decisions. The kinds of decisions you face may vary depending on the stage of pregnancy during which your loss occurred, but they are all painful. Remember, regardless of the stage of pregnancy during which your loss occurred, you are still a mother or father and the life you nurtured was real.
When your baby is given to you to hold, allow yourself as much time as you need to spend with your child. Examine your baby and hold him or her closely for as long as you wish. You may feel uncomfortable with the idea, but it will be a cherished moment in a later time. Keep and ask for any mementos and keepsakes of your child such as the I.D. bracelet, blanket, clothing they were dressed in, a lock of your child's hair, and any other items that were used in the care of your baby. Make sure and take as many pictures as possible-take pictures of the baby, the baby's hands and feet, the baby with family members, and the baby with stuffed animals for size comparison. As with holding, this may also be uncomfortable, but to go back later and look at yourself holding your baby may be a bittersweet moment in time. Most hospitals will issue the family a birth certificate, but make sure you ask so you are sure to get one, and request that it include the baby's hand and footprints-with plaster imprint or ink as available.
You may want to have an autopsy performed, or your doctor may wish to have one performed. You have the right to deny it, if this is your wish. You also have the right to limit the autopsy to eliminate any incisions on your baby that are not comfortable for you (for instance, you can give instructions that no incisions are to be made o the baby's head). Be sure to write these requests on the autopsy permission form. Some hospitals do not perform their own autopsies, so your baby may have to be transported elsewhere. Be sure you feel comfortable about where your child is being taken. You may find the option of autopsy beneficial in answering some questions about your baby's death; however, sometimes none of your questions may be clearly answered. You may also choose to have the autopsy done but wait to get the results until you are ready to hear them.
Regarding the arrangements for your baby, what may be suitable for one family may not suit another. Basic options are burial and cremation. Take your time; usually the decision does not have to be made the day your baby dies. If the hospital offers to handle your arrangements, be sure you understand where and what will be done with your baby. No matter what your choice is, you have the right to change your mind-be sure you ask whoever is carrying out your arrangements just how long you have to make any changes.
Some things you might keep in mind: Ask if you can bathe and dress your baby before the service if you are having one, again take pictures and hold your baby as much and as long as possible. If you feel comfortable, ask close family members or friends if they wish to hold your baby. You may be surprised at how meaningful this can be for all of you.
These are all permanent decisions, so take your time. This is your child and the last decisions you will make for him or her. Being comfortable with the decisions you make may eliminate some of the "I wish I hads" later on.
PHASES OF GRIEF
Grief produces both physical and emotional symptoms that are experienced differently by each individual. There are phases of grief that are common to most who experience a significant loss. Understanding these feelings as a normal part of the grief experience can be of great help.
- Shock occurs initially as nature's way of cushioning the blow and may last anywhere from a few hours to a few weeks.
- It may be hard to control your emotions.
- You may have little or no appetite.
- You may feel totally exhausted yet unable to sleep, or you may find yourself sleeping all the time.
- You may withdraw from others and isolate yourself.
- You may find it hard to make decisions.
- You may feel a sense of panic or other physical sensations such as heavy weight on chest or lump in throat.
- Things may not feel real.
- After the shock and numbness wear off, real grieving will begin.
Denial and Disorganization:
- You understand intellectually what has happened but yet deny the baby's death.
- You may find you forget things easily.
- Uncontrollable crying is common.
- You may feel confused and have trouble making sense of things that are happening around you.
- You may experience a lack of motivation and lose interest in your appearance.
- Depression is a strong emotion at this time.
- You may experience loss of appetite or overeating.
- You may withdraw from outside activities and family gatherings.
- You may feel this is just a dream and you will wake up any minute, bargaining to have things as they were before.
- You may feel that you are losing your mind, no longer have control of your life, and are very vulnerable.
- You may blame yourself for your baby's death, reliving every moment of the pregnancy searching for a cause and blaming yourself.
- You may feel that God is punishing you for something you did in your past.
- You may feel a loss of self-esteem, like you are less of a woman or man.
- You may feel that you have disappointed your partner and family because you did not have a healthy, live baby.
- You may search for a reason for your baby's death, believing you can prevent it from happening again during a subsequent pregnancy. Sometimes these feelings are stronger when your doctor can find no reason for your baby's death. Mothers, especially, feel that since they were the one carrying the baby, or the primary caretaker, they should have predicted or prevented it.
- You may find yourself feeling angry with the physicians or nurses, your partner, or even your baby and God. You may just feel undirected anger.
- You may feel restless and impatient.
- Anger is a normal emotion and it is important that you express your anger instead of holding it in.
- Feelings of anger at yourself may be experienced as guilt.
- Feelings of hopelessness may be pervasive.
- You may feel an intense loneliness and yearning for your baby.
- You may feel cheated.
- Physical symptoms may include fatigue, changes in appetite, and sleep difficulties.
- You may find it difficult to make the simplest decisions, you may lack motivation, and you may experience impaired judgment.
Reorganization and Acceptance:
- The transition to acceptance is usually very gradual, and feelings are like a roller coaster for a long time.
- Your judgment will improve and you will feel a sense of release, acceptance and peace. No one can predict how soon this can occur.
- You will be able to enjoy yourself without feeling guilty.
- You will not forget your baby, but you and your family will be able to go on with your lives again. You will return to a new state of "normal" which will incorporate remembrances of your baby.
Naming and describing the emotional elements of the grieving process can provide a framework for understanding; however, it is important to understand that you may experience all, some, or only a few of the phases described above. Also, the grieving process is not linear, nor do the various emotional states occur in isolation; meaning, you may move back and forth between the phases, and you may experience more than one at a time. Many bereaved parents, while ultimately reaching a state of acceptance, will still carry elements of the more acute phases, such as guilt and anger, that may continue to surface periodically for the remainder of their lives, especially around birth and death anniversaries, or if they hear about a similar experience affecting someone else. This too is normal. The death of a baby is a catastrophic event. Allowing yourself to experience, acknowledge, and reflect on the very difficult emotional responses that may surface is what the grieving process is all about, and it is what will enable you to integrate your baby into your life-not just your past, but your present and future as well.
UNDERSTANDING AND COPING WITH GRIEF
As stated in Doug Manning's book, Don't Take My Grief Away, "Grief is not an enemy, it is a friend. It is a natural process of walking through hurt and growing because of the walk." Grief cannot be ignored, avoided, wished-away or given back; however, it can be experienced, endured and survived. Normal grieving, with its many ups and downs, lasts far longer than society in general realizes. Be patient with yourself. Let it happen.
The following suggestions are intended to help you through the grief. They have been gathered from experiences of other bereaved parents and from studies and writings of professionals in grief counseling.
- The first step in coping with your loss is accepting the reality of your baby's death.
- Many people find it helpful to keep tangible remembrances such as locks of hair, the blanket the baby was wrapped in and the clothes the baby was dressed in, the ID bracelet, footprints, photographs (especially one of you holding the baby), and birth certificate. If you are unable to obtain a birth certificate, your hospital may have a certificate of life available to you. Find a special place for your keepsake remembrances.
- You may find it makes your baby more real to you and others if you name your baby, even if you do not know the baby's sex.
- Avoid making hasty decisions about the baby's belongings. Do not allow others to take over or to rush you. Wait to make these decisions whenever you feel ready, but ask for help to carry these out as needed. Feel free to change your mind.
- You may want to have a memorial service for your child at the time of the loss or at some later time such as the anniversary of your child's death, due date, etc.
- Accept your emotions (feeling angry, guilty, afraid, etc.) and allow yourself to express them in whatever ways you find comfortable. Take time to cry. It is a very healthy expression of grief, which releases built-up tension. Strong men can and do cry. Consider whatever you do to be normal for you.
- Guilt, real or imagined, is a normal part of grief. In order to resolve this guilt, learn to express and share these feelings. If you make mistakes, learn to accept that we are all imperfect. Only hindsight is 20/20. Learn to forgive yourself. Bargaining is also normal (I'd give _____ to have the baby back)
- Writing a journal about your feelings and writing a letter to the baby telling him or her how you feel can be beneficial in several ways: emotions not easily verbalized are sometimes more easily expressed on paper, these records may serve as a precious reminder in the years to come, and you will be able to see how your feelings change over time. Share these with your spouse to encourage communication.
- As you talk about your baby, friends and relatives may be uncomfortable around you. Although they want to ease your pain, they do not know how to do so. Help them learn how to be supportive of you by telling them what you need and how they can help. Talk about your baby so they know this is appropriate. Use your baby's name in talking of the baby. Find someone you can talk to. If the person to whom you turn does not offer the support you need, you may want to find others who can be more supportive. Someone who has experience a similar sorrow or a peer support group may best be able to offer the support you seek.
- Allow yourself to have "down" days even after you feel you are making progress. Allow yourself time to grieve. Be gentle with yourself. Know that anniversary dates and holidays may be especially difficult.
- Avoid alcohol and sedatives that may cloud your thinking and slow or stop the grieving process.
- Physical reactions to the death of your baby may include loss of appetite or overeating, sleeplessness, and sexual difficulties. You may find you have little energy and cannot concentrate. A balanced diet, rest and moderate exercise are especially important.
- When possible, avoid making major decisions (changing residence, jobs, getting pregnant, etc.) immediately following your loss (approximately 6 months to 1 year).
- In time, allow yourself the freedom to laugh and enjoy happy times again. It is natural to feel guilty as you laugh and enjoy things again. Go easy on yourself. Turn grief into creative energy that expresses love for your baby through such things as art work, crafts, decorating the grave, and other ways. If you have writings abilities, use them. Great literature has been written as a tribute to someone loved and lost.
- Know that the intensity and duration of your feelings will lessen in time. Do not try to rush through the grieving process; slowly you will rebuild your life as you work through your grief and come to terms with your loss. You will be changed in the process, but you can expect to resume a satisfying and productive life. The memories of this time will become part of your life that you can cope and live with. Reaching out to someone else in need may help you cope as well as heal. Support groups can be especially helpful in meeting others who have survived these same challenges.
- The death of a baby often causes parents to challenge and examine their faith or philosophy of life. Do not be disturbed if you find yourself questioning old beliefs. Seek out individuals, such as counselors, clergy, or other s who may be able to offer helpful insight.
CHANGES IN YOUR RELATIONSHIP WITH YOUR PARTNER
Probably the worst experience a couple can go through is the death of their child. Generally, couples may anticipate that their parents or siblings may die during the couples' lifetime, but certainly they do not have any expectation that a child they loved and wanted and had hopes and dreams for will die. This causes also a loss of innocence and invokes vulnerability. When a parent or sibling of one partner dies, the other partner is able to provide comfort and strength. This will probably not be the case when a child has died. The baby's death is a devastating loss for both partners and, with both trying to cope with what has happened, one partner may not be available to the other for comfort and support. In spite of your overwhelming individual grief, however, you can continue to grow together as a couple and to perhaps deepen your relationship with your partner. The primary emphasis should be on communication and honesty. Let your partner know what you are feeling; you should not expect your partner to be able to tell how you are feeling unless you tell him or her. In return, you should not assume that you know how your partner is feeling; give your partner the opportunity to tell you.
Good communication is not a skill that is inherent in many of us and you may find it difficult at first to fully share your thoughts and feelings with your partner. But it is well worth the effort. You should be aware, too, that your partner may not be thinking or feeling the same things you are. Studies have shown that there are marked differences in how men and women respond to the death of a baby and in how they work toward grief resolution. The differences may be partly explained by societal influences that begin to affect us early in life. For example, little boys are told not to cry and to be a "big boy" while little girls are allowed to be expressive. These influences carry over into adulthood. Women are permitted to express their emotions; men are admonished to "act like a man." Generally, women tend to externalize their thoughts and feelings and may be much more willing than men to verbalize, to cry, and to reveal their emotions. Men, on the other hand, tend to internalize their thoughts and feelings and may find it difficult to reveal their emotions even to their partner. A man may not have the same sense of "connection" his partner had with the baby because he did not carry the baby and was not aware of the movements and personality of the baby as his partner was. Women may find it hard to resume their daily routine or to face their daily tasks while men may return to work and to seemingly face life within a relatively short period of time. These differences may cause the couple to feel that they are at odds with each other at a time when they should be there for each other. Support groups can be particularly helpful in instructing each spouse how differently men and women grieve. If the man is one who internalizes grief, the woman may feel that he does not care or that he did not love the baby as much as she did. Also, the man may feel that his partner is too emotional and is unnecessarily prolonging her grief. It is not unusual for a man to feel powerless to help his partner and to want to "fix" everything and make it right again. Many times a man will be so concerned with helping his grieving partner that he will delay his own grieving until he feels that his partner is over the initial intense grief. If is also not unusual for a man to grieve in private and his partner should not be concerned if he does not seem to be grieving as intensely as she is. If you understand that there will probably be very real differences in the way you and your partner react, and to remember that there is no "right" way to grieve, you may be able to avoid some of the difficulties many grieving couples encounter. And you must remember, too, that you are grieving as a couple as well as individuals.
There are many things you can do to help your partner through his or her grief. Even though you are in the midst of a profound loss, you should give your relationship top priority. Again, communication is essential even if it is as subtle as a hug, a kiss, simple listening, or sharing journaling or poems either individual has written. Understand that your partner may not be in the same "place" as you are in your grief and that that's okay and normal. Give both you and your partner private time to work through individual grief. As much as you may not want to, you should plan some enjoyable activities together and give yourself permission to let go of your grief for short periods of time. Also, each of you may need to find someone outside the relationship to talk to. In time, you will work through your grief and the foundation and commitment that began your relationship as a couple will continue.
HOW TO SHARE THE NEWS AND ASK FOR HELP
"Our baby died last night and we need your help and support"
"Something went wrong at the birth, and our baby wasn't strong enough to survive."
"I know you shared in our excitement during the pregnancy, and we want to help you with us in our sadness. It is okay for you to be sad in front of us."
"This is as hard for you to hear as it is for me to say, but our baby was born too early and just didn't have the strength to live."
"I never dreamed that it would be so painful. I need to share my feelings of sadness and grief."
"It's so hard because nobody knew this baby, and I feel so alone."
"It's important for me to talk about this baby, and it is important for you to acknowledge and talk about the baby."
"We don't know why the baby died, and that makes it even harder for us to understand and accept."
"You're young, you can have another." or "At least you still have your other children."
"Perhaps, but we really loved and wanted this baby."
"No one can replace this child."
"Thank goodness you never brought him home:"
"That fact may make him less real to you, but I assure you I had already envisioned him playing in every room of the house and he was already a part of this house before he was born, etc."
To the father- "How's your wife doing?"
"Do you mind asking how I am, because I'm hurting too."
"You are lucky to have a little angel in heaven." or "Well, you can look forward to being reunited again someday in heaven."
"I know you are trying to be kind, but statements like that bring me more pain, not comfort."
"I want my child here with me now, in my arms; I don't know a single parent who would volunteer the life of their child to have the "good fortune" of an angel on their side "in heaven".
To someone who makes no response at all or changes the subject when you share the news of your loss.
"I realize that what I just said may be difficult to hear and respond to, but I really need you to acknowledge our baby and the pain of our loss."
"Are you going to try again?"
"That is a very personal question and right now what I need to hear is that you are concerned for me and sad to learn of my baby's death."
"Right now we need to grieve for our baby and learn how to survive this unbearable loss. We can't plan for our future until we accept our present."
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. My 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.
Miscarriage, 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