Bereaved families need a compassionate presence

Eight months into a healthy pregnancy, my belly suddenly hung lower. I noticed that the baby’s movements slowed, decreased in frequency, and seemed sluggish compared to just a few days before.

Concerned that something might be wrong, I called my obstetrician’s office and described what I’d noticed. The nurse I spoke with gave rote and reassuring advice: “Babies often get crowded near the end of pregnancy,” she said briskly. “Drink some orange juice, lie down and rest. We’ll see you for your appointment on Tuesday.”

I don’t know for certain when I last felt movement, but sometime between hanging up the phone and the silent doppler at my appointment four days later, my baby daughter died, cut off from the placenta by a true knot in the umbilical cord. In my subsequent two pregnancies, the OB could justify a second and third ultrasound (plus non-stress tests and biophysical profiles in the third trimester) to the insurance companies. Unfortunately, I had to deliver a stillborn baby before my insurance company would cover the imaging that might have saved her life.

Over the eleven years since my daughter was stillborn, I have written and spoken about the topic of stillbirth and grief support. When I edited a collection of narratives about stillbirth, I noticed a significant theme coming up in the twenty essays: Writers avidly described whether health professionals were supportive or coldly disinterested. This focus recurs in online grief community message boards as well as in conversations with bereaved parents in support groups.

I would go as far as to say that the quality and level of support families feel from their physicians, midwives, nurses, and other staff is the single biggest factor in personal narratives of grief even many years after a baby dies. Encounters with healthcare providers may only last a few hours or days, but the compassionate presence of doctors, nurses, and other medical professionals helps families as they say goodbye to their babies and start to integrate grief into their lives.

I’ll always remember, about an hour after delivering my daughter’s body, one of my nurses was quietly crying while attending to the body. She came over to me, put her hand on my shoulder and just said, “I am so, so sorry.” Those few words meant so much to me, and it later struck me that this nurse was one of only a handful of people in the world who held my daughter. It meant so much, then and now, to know that she was sad with and for us. It felt like she was participating, albeit in a professional sense, with our loss.

Bereaved families often need caring health care providers to give them permission to do things they might not ever have had to consider before: How much time to spend with their babies, whether to give their babies a bath, how to incorporate visitors into this brief, precious time, etc. A mother still needing help managing her own recovery and physical pain may later regret not having done these things once it’s too late to have that time back. Several essays in my book express gratitude to nurses and doctors who offered to take photographs of their baby. Even families who might initially think they don’t want a lot of photos later on appreciate the wise foresight of hospital or birth center staff who gently offered to take some. Because maternity nurses and doctors have perspective and aren’t in emotional shock like parents might be, they can serve as a guide so that families will be less likely to have significant regrets.

One of the most common complaints about medical professionals regards careless or unintentionally hurtful words. In my opinion, it is better to say less than to talk a lot or say hurtful things. Neither I nor many of the contributors to my book appreciated “at least” statements. For example, “at least you have a living child” or “at least you’re still young” or “at least your baby didn’t suffer.” In the earliest stages of accepting the end of a pregnancy and a baby’s death, there is no “at least”–there is often just sheer pain and sadness. Thankfully, my obstetrician did not offer any pat or empty cliches, but I have heard stories of dismissive advice and curt dismissals snapped out by doctors and nurses.

Finally, one of the motifs repeated in grief narratives is how strange it is, after a personal tragedy like having a stillborn baby, to see the world going on like nothing is any different: kids playing soccer, people driving home from work, the sun shining. In cases of perinatal loss (in contrast to other types of grief from the death of a loved one, when one might have mementos or a lifetime of memories), bereaved families need to hear that their pain is real, that their loss is validated. As I walked out of the hospital, I carried the memory of my emotionally-available and caring nurses and doctors with me even as my arms were empty.

The time that health care providers share with grieving parents and families as they deliver and say goodbye to their stillborn babies can support them as they reenter the world. With compassionate presence and support, doctors, nurses, and other medical staff affirm that their babies were real, that they are not alone in mourning, and that their grief is valid.

Janel Atlas is the editor of They Were Still Born: Personal Stories about Stillbirth.  She can be reached at her self-titled site, Janel C. Atlas.

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