infants-by-graveThis article by Elizabeth A. Pector, M.D., a Family Physician of Naperville, IL, discusses how the loss of a child or children (during pregnancy, at birth, or in infancy) affects the family of multiple birth children. Dr. Pector is an active member of the MOST Professional Advisory Board and a mother to two sons: one a surviving twin.

 

Intro by Dr Pector:

The death of multiple-birth children is a tragic event for parents and families.  This article, shortened from an original written in 2001, is a broad overview of the journey toward healing from loss of one or more children from a multiple pregnancy, based on expert opinion from clinicians, perinatal bereavement support professionals, and peer support organizations for multiples and bereaved parents. Every situation and every person is different. Complex considerations within twin or higher-multiple pregnancies make it even harder to predict what you might feel, and when. As you read this, focus on what applies to your situation. 

If you have not yet delivered your children and know you will have a loss, I encourage you to promptly contact a hospital social worker, local pregnancy loss support group, and/or a national multiple-birth support organization, the Center for Loss in Multiple Birth (CLIMB, Inc.), SHARE, and any organizations dedicated to the condition that caused your multiple child(ren)’s death. These sources can provide information to help you prepare for delivery and understand your options for making memories and final arrangements for your child(ren) who died. After delivery, contact with such groups might help you better understand medical factors that led to your loss and introduce you to parents in similar situations who can offer mutual support.

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detour-signIf you think of life as a road, the death of a child is like hitting a roadblock and being forced onto a winding bumpy path with poor lighting and no road signs.  You eventually find a smoother road again, but it’s headed in a different direction than your original mental map of where your life would lead. Grief is the rocky path that leads to this alternate route.  Although you may not be able to imagine it now, positives can emerge from this very distressing experience.

 

Grief after the death of one or more multiples may be more complicated than coping with the death of a singleton child.  How you grieve will depend on the situation, your personality strengths and weaknesses, your feelings about having multiples, your previous experiences with death, and your sources of support.  You may miss more than just your child(ren).  You have lost unique hopes and dreams, including the attention and challenges that come with a multiple parenting experience. Some parents lose the last few months of pregnancy or the chance for a happy delivery. A loss after infertility treatment can severely damage parents’ self-esteem, causing them to wonder if they were really meant to have children.  Parents who struggled to adapt to the diagnosis of multiples are deprived of ever knowing how they would have succeeded in raising the full set together, and can’t witness the emergence of unique personalities and sibling relationships. Illness or disability in surviving children present further challenges.

 

Parents wonder how long they will grieve. While most will never forget their children who died, active mourning has a measurable time course. After a singleton pregnancy or infant loss, grieving has been estimated to take 6 to 24 months.  Grief after the death of an entire set of multiples is often more intense than that for a singleton, and may take an average of six months longer than a singleton loss (or 1 to 2-1/2 years).  Parents who have surviving multiples, especially if they are premature or have complicated medical needs, may delay grieving for deceased children until a few years after their death, if the care of living children is then less demanding. (If care is still demanding, grief may be even longer.)

 

There’s a limit to how much people can cope with at once, so it’s not uncommon to defer grief until you’re more able to handle it, sometimes with sudden and surprising emotion long after the event. At times, grief is piecemeal, interrupted and interspersed through stressful present-life challenges for five or more years.

 

A few myths need to be busted. First trimester miscarriages aren’t necessarily less distressing than later pregnancy loss. Parents grieving the loss of a fetus affected by severe anomaly, even if they elected termination as their heartbreaking best option, may grieve as intensely as parents who suffer loss of a healthy fetus. There are still some surprise multiples diagnosed at birth. Saying hello and goodbye to never-suspected babies is difficult but important, since parents may grieve for an unexpected child as deeply as those who knew about their multiples for months. Finally, the existence of other children, from the same or earlier pregnancies, does not make grief for the deceased child(ren) any easier.

 

Authorities on pregnancy and infant loss describe four major phases of mourning, which may overlap, with aspects of all phases present at the same time. The path of grief is pitted with potholes, or may seem like a trail up a sand dune–2 steps forward followed by one step back. As time goes on, extremely sad days may come less often–every month or two instead of every day or two. Progress is sometimes hard to see, but does happen little by little.

 

  1. Shock and numbness For a few hours to a few weeks after learning their child has died or has a serious abnormality, parents feel stunned. Some may laugh or joke inappropriately, relate medical facts unemotionally, or otherwise seem to function “too normally.” This is a sign that they are still in shock. Some feel they’re in a dream, or outside themselves watching the event as though they’re in a movie. Trouble concentrating and making decisions are very common. Anxiety, panic, frenzied activity, or prolonged crying all can be normal. Some parents feel overwhelmed or lose self-esteem. The combination of shock and lost self-confidence can make some parents feel they don’t need or deserve counseling or support. Parents frequently do not think to ask hospital staff, friends or family for help.  Fathers, grandparents and other children can especially benefit from support from hospital personnel at the time of loss. If you feel you can manage on your own, keep an open mind about the possible value of future counseling, since these loss can be much more draining than you can imagine right afterward. Professionals can often help parents work through jumbled feelings about a very complicated situation.

 

  1. Searching and yearning Once the initial shock wears off, parents enter a deep grief phase that normally lasts about 4 months after singleton loss (and can be longer or shorter in multiple loss). Physical signs include aching arms that long to hold all of your children together, heartache (heaviness in your chest), fatigue, trouble sleeping, restlessness, headaches, or an increase or decrease in appetite. Dismay at normal body changes after pregnancy (breast engorgement, abdominal sagging, etc.) is possible. Breast feeding survivors can be emotionally challenging, since mothers may be painfully reminded of the missing babies. Women have been known to cradle dolls, vegetables, pets or pot roasts in an attempt to fill their empty arms. Parents may yearn for their deceased children, subconsciously wishing ladybugto see them and reconnect with them. Some parents describe feeling that yet another baby needs to be changed and fed after all survivors have been cared for. It is common to dream about the children being alive, hear a phantom baby cry, or believe that the child(ren) are present in spirit or sending messages through nature or coincidences.

 

  The process of making meaning also begins: a search for medical, psychological and spiritual reasons for loss.  This may include reviewing       the course of a complicated pregnancy, birth and/or infancy. The seemingly exhausting search for information, is part of coping with a new     situation. Parents may feel jealousy, or even physical pain, when encountering media images and families with intact sets of multiples.  This   may endure for years, and family or friends of bereaved parents who have their own multiples would do well to minimize direct contact and   talk about their own children soon after the loss occurs. Grieving parents may feel anger, guilt, hopeless or helpless feelings, as well as  isolation–feeling they’re the only parents who ever suffered their type of loss. Difficulty concentrating continues, and parents often find ittle meaning in work or normal activities.

  Men and women may find their grief reactions are very different.  Women are likely to have crying spells and depressive symptoms for many months.  Men’s sadness often is limited to the first few weeks or months, and they may take on a problem-solving, decision-making     role as the “strong one” in the family. Over the following months, many men turn to work, hobbies, exercise, alcohol or substance use to cope with stress. Sadly, this can leave grieving mothers feeling even more isolated, whether home with no babies, or burdened with care of    survivors.  Careful communication between partners, and often counseling, help parents understand differences in mourning and care for    their relationship.

  1. Disorientation and disorganization This stage usually begins about 4 months after a singleton loss, peaks at about 6 months afterward and lasts until 9-12 months after the death. It can be prolonged with multiple birth loss. Those who lose both or all of their children have more than one baby to grieve for, and parents with survivors have competing and conflicting emotions. By this stage, the most severe physical and emotional reactions of grief have eased, and support from family and friends has tapered off. However, parents may be continued physical symptoms, including lowered immunity to infections, stomach problems, high blood pressure, or other stress reactions for up to 18 months after their loss. Psychological problems may persist, such as fatigue, trouble concentrating, depression, lack of motivation or enjoyment. Some parents find themselves hyperactive and disorganized, starting projects without completing any. The search for answers may continue. Some parents seek something to blame–themselves, God, their partner, surviving child(ren), or doctors or nurses.  Others feel a need to seek forgiveness from the baby(s) who died, their spouse, or their survivors. Parents may find socializing difficult and withdraw from family or friends, feeling they don’t fit in.  Indeed, some family, neighbor and friend relationships are sorely strained and even permanently broken after a child’s death.

Parents after a multiple birth loss often don’t feel they belong in traditional pregnancy loss support groups, parents of multiples clubs (even if they have two or more survivors), or support groups for children with special needs. It is important to piece together support and understanding from whatever sources work for you. Some prefer to work through grief privately.

 

  1. Resolution and reorganization This phase is a gradual transformation to a “new normal” that usually occurs between 12 and 30 months after a singleton death and 2 to 5 years after a multiple birth loss. Self-esteem, energy level, appetite, sleep, concentration and decision- making improve, and parents can enjoy life again. Specific triggers may evoke sad emotions, such as encounters with intact sets of multiples or with children who share the name of the deceased child. Very often, holidays, Mother’s and Father’s Days, birth and death anniversaries rekindle sorrow, but new routines and a new outlook on life have emerged. Birthdays and major milestones (first smile, first tooth, first steps, first day of school or preschool, even first dates of teenagers) for parents of survivors and special needs children evoke bittersweet thoughts of what could have been.

 

Sexuality can be a source of both comfort and conflict after loss. Parents may feel either a strong desire or strong fear of another pregnancy. Some parents deeply desire multiples again, while others strongly fear the risks associated with twins or more. Many bereavement experts recommend that parents work through some of their grief before trying again. It’s crucial to know that another child, even repeat multiples, won’t replace those who died, although there may be some easing of grief with a successful pregnancy after a loss.  Some must try quickly because of their age or a history of infertility. Counseling and support groups for parents pregnant after a previous loss can help parents cope. Parents who conceive soon after pregnancy loss sometimes find they grieve more intensely after the birth of the subsequent child (or children). When a new baby or babies come home, parents realize anew the uniqueness of the child(ren) who had died.  Some parents cannot try again for pregnancy, may be unable or unwilling to adopt, and must adapt to a childless lifestyle after unspeakable grief in their quest for parenthood.

Finally, parents of survivors may worry about how the living children will react to the loss.  This has not been thoroughly studied. From
anecdotes, we know some surviving multiples have a sense of loss or loneliness, and most cope in a healthy way and become productive, well-adjusted adults. An important factor in the adaptation of the entire family is how well the parents work through and communicate during their grief. The more complicated the situation, the more helpful you may find professional counseling to supplement support from friends, family, support groups, religious and community organizations.  I encourage you, especially if you feel overwhelmed, to reach out for help.  If one counselor doesn’t seem to be a good fit, try another. You can heal–but with a scar. We move on through life, our multiples in our hearts as an important, but not all-encompassing, part of our life story.

I extend my deepest sympathies to you on the death of your child or children, and hope this outline offers you helpful guideposts along a challenging but meaningful road to recovery.

Beth Pector

ADDITIONAL RESOURCES:

  • Center for Loss in Multiple Births (CLIMB): climb-support.org
  • Share Pregnancy and Infant Loss Support, Inc. (chapters in many states): nationalshare.org/
  • Stillbirthand Neonatal Death Support (SANDS) (chapters in UK, Australia and USA): uk-sands.org