The Search for Why

As a bereaved mom who happens to be a family physician, I’ve had quite a few CLIMB members, other bereaved parents, and even attorneys ask me to consider reviewing autopsy reports, medical records, etc. Since I’m not an expert in the medical aspects of perinatal multiple birth loss, I always politely decline, and refer parents back to their treating professionals. It is often very difficult for parents to approach them, for many reasons – bad interactions at the time of loss, bad memories, lack of trust, sense of blame, etc. To many parents, I have responded with a question of my own – Why do you want to know? Why do you need to know?

The search for medical, factual answers is as much a part of the grief process as the search for spiritual or psychological meaning in loss. It can become obsessive, and you can sometimes lose sight of WHY you are exhaustively researching the medical facts behind your children’s death.

Ultimately, each parent has a need to find “sense” and peace on many levels: intellectually, emotionally, ethically, and spiritually. When there is no clear answer, or when the answer is troubling or complicated, the search can last years as you become a mini-expert on the type of loss you suffered.

Sometimes the attempt to find clear medical “sense” and peace muddies the waters in other areas. New treatments that were not available, or were experimental, at the time of your children’s death can cause you anguish, making you wonder why no one told about a breakthrough that might have saved them. When answers to your questions suggest that the caregivers in whom you placed ultimate faith betrayed your trust, anger and hurt can take over your life.

For some parents, “Why did he/she die?” is closely tied to “Why did I let it happen?” A direct decision to reduce a high-order multiple or anomalous pregnancy, or to terminate life support for tiny preemies, incites parents to soul-searching to determine whether they are morally to blame. They may also be angry at reproductive or medical caregivers for having ended up in such a no-win situation in the first place. A conference with a bioethical committee at the hospital can help parents understand the many factors used by the caregiver-parent team to make a decision no parent should ever have to make.

Sometimes the search for answers leads to parents blaming themselves for not seeking care with a more expert physician or team. Others blame doctors, even at a high-risk center, for what they view as poor decision-making or monitoring. Some parents wonder if their survivor or their deceased child was “at fault” (especially with TTTS, conjoined twins, etc.) or if the dead baby(s) “made a decision” to die.

The difficult implications of the questions “Why us? Why my children?”, and their answers, make it important to get help in coping with them medically and psychologically. The answers you find for both the factual and spiritual parts of these questions influence your subsequent childbearing decisions, your psychological state during subsequent pregnancy or attempts at pregnancy, and interactions with any surviving multiples or subsequent children as they grow up. A good counselor can help you make sense of your reasons for search, process your reactions to the answers you find, and help you to come to terms those answers – including, often, the troubling fact that no definitive answer exists in your case – that a tragedy simply “just happened” without reason.

Bearing all of these thoughts in mind, some practical pointers:

When looking for a medical reason for the death, it is important to try to get as much information as possible from those directly involved, including a death conference with the perinatologist⁄ OB⁄neonatologist or specialists involved in the case. Comprehensive autopsies, including placental, chromosomal, and genetic analysis, have been recommended by experts in stillbirth and multifetal pregnancy loss. In the case of chromosome or genetic studies, material should be obtained as soon after delivery as possible. Autopsy can be delayed for a day or two without too much vital information being lost. The findings of these studies are best reviewed a month or two later when parents are no longer in a state of acute shock. Often, we don’t hear anything beyond “your baby died and…” in the days right after loss.

In some cases, especially where the parents suspect malpractice or suboptimal care, the involved professionals may be reluctant to talk, share records, or answer questions. Communication is still important. Most hospitals have trained personnel to help facilitate discussion when unfortunate incidents have occurred. Getting as much explanation as you can soon after your loss, when memories are fresh and records are readily available, will help you months and years later when your memories are foggy. Take a notepad, and someone for moral support (and as a witness, should it later be needed), with you to the interview. If you do your own research (or have a medically knowledgeable person help you do some) on the Internet, keep in mind that not everything you read might have been applicable to your specific circumstances. Going in with an attitude of sharing knowledge and looking together for answers will likely get you more honest answers than throwing a stack of papers at your caregivers and saying “THIS is what you should have done!”

Parents often years later have a need to review controversial or heart-wrenching decisions. Among the more common that I’ve heard from parents: “Should I have reduced my pregnancy? Was I right to reduce? Should I have reduced from 3 to 1, 3 to 2, 4 to 3, 4 to 2, 4 to 1, 5 to 2 instead of what I chose? Should I have pushed them to deliver my babies earlier? Should I have pushed for life support to be continued? Would she have survived if I did? Would it have been more humane to discontinue life support instead of subjecting my survivor to such a painful life? Should I have chosen selective termination of an anomalous fetus? Should I have continued pregnancy after they told me about conjoined twins, a baby with Down Syndrome or other problems? Should I have chosen the other option for TTTS: laser surgery vs. serial amnios?”

It’s human nature to think that if we decided differently, we would have had a different and happy outcome. Most people make the best decision they are capable of making with the information they have available at the time. Professionals are trained to advocate in the child’s behalf, taking into account the parents’ wishes – what they think the child would want, or the option doctors indicate has the best chance of successful outcome or viable delivery. For many parents, reviewing decisions honestly with the doctors or nurses who handled their pregnancy or helped care for their multiples – 1, 2, 5 years later – has helped them to put the second-guessing to rest.

Try to get the names of the doctors, nurses, interns, residents, chaplains, clergy, professional ethicists, and anyone else important to your decisions soon after your children’s birth and death. These people may be important to contact later if you are having a second-guessing crisis and need to talk to someone who was there when it happened. Do allow them the courtesy of reviewing their notes if you want to approach them years later.

Parents have a right to have their questions answered and to have explained to them what was or wasn’t done when and why. If it is not possible to talk with the caregivers, or it does not completely answer your questions, another avenue is requesting a consultation with a perinatologist (maternal-fetal medicine specialist), bringing all the records. The perinatologist can go over everything and discuss what they think happened and any recommendations to prevent recurrence in the future. Some perinatologists do this fairly routinely, and insurance often pays for it as a legitimate consultation. Another avenue is having an experienced malpractice lawyer review the records and formally consult an expert. This does not obligate parents to pursue litigation. You may and should review all the records including asking the above questions to your own doctor before going to a lawyer.

Finally, understand that medical personnel grieve, too. Physicians and nurses often go into obstetrics because it’s a happy field and they are inspired to bring new life in the world. If they have worked with you through a very challenging pregnancy, only to have tragedy strike in the end, they will be hurting, too. They often replay the situation many times in their own minds, looking for clues, or for a decision point at which they could have made things turn out differently. At the time of birth, in order to function objectively, they may have seemed to distance themselves from you, avoid you, had vague answers to your “why” questions, or broke down in tears when you pressed them to explain what could have done to prevent your tragedy. While it’s normal to think the doctors were “being jerks,” they may have needed to step back a bit as a defense mechanism and to get perspective needed to continue caring for you and any surviving child(ren). They may be more approachable 1-2 months after delivery at a conference about your loss…so try to withhold final judgment until then. All professionals, doctors and nurses, should ideally be professional and rise above their own sadness and grief to meet your needs in the moment where it counts…but they are human too. I know. I’m one of “them.”

Forgiving caregivers for failing to meet our emotional needs in the heat of crisis is something I still struggle with. I can tell you I recognized clues, even 3-5 years later, when talking with caregiver-colleagues I had initially viewed as “cold” and “heartless” that indicated they took my loss and other perinatal deaths and “failures” to heart. They do care, and remember us and our lost children – often vividly – years later.

Elizabeth Pector, MD
…Beth is the mother of identical twin boys, one of whom – Bryan – was stillborn at 34 weeks along with no known cause.