In this blog, Susannah Hopkins Leisher shares her experience of the trauma of stillbirth and impact on subsequent pregnancies and, with researcher Aleena Wojcieszek, looks at gaps in the evidence on how to care for such women and their families. Please be aware that some may find the content of this blog upsetting. This blog is part of a series called ‘Maternity Matters’.
Aleena: the researcher
Some may assume that conceiving a new pregnancy after stillbirth might be somewhat of a “cure” for the trauma of stillbirth; that it’s the inevitable “happily ever after” for families who endure the death of their child, and nothing more needs to be done for these families. But does this really stack up?
When I started my PhD on care in pregnancies after stillbirth, in late 2015, I knew I was entering relatively unchartered waters. I wasn’t sure what I might find, just that it was an area of enormous need.
From my early reading, a few things were clear: stillbirth has profound and sometimes intergenerational effects on families; most parents who have a stillborn baby do conceive again; these parents have a higher A way of expressing the chance of an event taking place, expressed as the number of events divided by the total number of observations or people. It can be stated as ‘the chance of falling were one in four’ (1/4 = 25%). This measure is good no matter the incidence of events i.e. common or infrequent. More of (recurrent) stillbirth than parents who have no history of stillbirth; and many parents go through intense anxiety and fear in their subsequent pregnancies.
So what care do parents currently receive in pregnancies after stillbirth? And what care should they receive?
For our recent Cochrane Review on care for pregnant women and their families following stillbirth, we looked for all relevant Clinical trials are research studies involving people who use healthcare services. They often compare a new or different treatment with the best treatment currently available. This is to test whether the new or different treatment is safe, effective and any better than what is currently used. No matter how promising a new treatment may appear during tests in a laboratory, it must go through clinical trials before its benefits and risks can really be known. More and found only 10 trials with Data is the information collected through research. More from just 222 women. They looked only at medical interventions. Not one looked at ways to help parents and families in terms of their feelings and experiences, or how to reduce parental anxiety or promote attachment between mother and baby, for example. It has confirmed a huge evidence gap, rather than provided any guidance on what quality care for these women and their families might look like.
We have much to learn.
Through my studies I have met many bereaved parents who went through a subsequent pregnancy following perinatal death, mostly due to stillbirth. Their stories are all unique, but there are some common themes across their experiences.
Susannah and Craig Leisher, their sons Wilder and Zimri, and the whole Leisher family, all hold a special place in my heart. Their story has stayed with me throughout my PhD candidature. I’ve even been privileged to share a small part of their story in conference presentations and public research seminars during my PhD, sharing with audiences some of the precious family photos in this blog.
It’s families like The Leishers that this research is ultimately for…
But it would be remiss of me to go on here. I would like to now pass on to Susannah herself to share her story, what this research means, and where to next.
Susannah: the mother
Craig and I started trying for a baby almost as soon as we got married, and I became pregnant quickly and easily. We were living and working in Vietnam at the time. The first time I felt Wilder move, I was in a tiny village in the mountainous region on the border with Laos, doing fieldwork.
I was a new mom, so at first I wasn’t sure – but then it happened again, and I was sure, and thrilled: our baby was real, and making his (or her) presence known! You can see in this photo how excited and happy I was.
The months went by, and my pregnancy progressed perfectly. I was so careful. I eagerly followed the least bit of advice, giving up coffee and alcohol and tracking my weight gain religiously.
About a month before our due date, Craig and I flew back to the States to stay with my parents in Cambridge, Massachusetts, as we had decided to have our first baby back home. On a Thursday, I went for my regular midwife appointment. All checked out. On Friday, I treated myself to a pregnancy massage. On Saturday, Craig and I went downtown to buy sheets. That night, for the first time, I felt a hint of concern.
As we prepared for bed, I mentioned to Craig that I had not felt the baby move, whereas his habit was to move around in the evenings. On the morning of Sunday, July 11, 1999, realizing that I still hadn’t felt the baby move, we consulted our bible, “What to expect when you’re expecting”. It said to drink a glass of juice and wait an hour for the baby to respond to the extra sugar. I made it through about 45 minutes and then we agreed to call the midwife. She was friendly but nonchalant, and told us to go on in to the maternity ward to double-check that everything was okay. On the short drive over to Mt Auburn Hospital, I confessed to Craig how silly I felt, worrying like a stereotypical new mom over nothing.
Nothing. Only the penetrating hiss of static…
In a small room on the maternity floor, the technician smeared the familiar jell on my tummy and began to probe. Nothing. Only the penetrating hiss of static, which I will never forget. Troubled, she smeared more jell on my tummy and tried again from a different angle. She then said she was going to fetch a different machine. I hit the concrete wall hard with my palm and yelled “What is going ON??????” A new person appeared, wheeling a small ultrasound machine. She did another exam, telling us in a monotone, “I see the legs. I see the head. I see the heart. The heart should be beating, but it is not.”
That was 20 years ago. Today, as I type these words, my heart is racing. My grief is ever with me, fresh, just below the surface.
I delivered Wilder Daniel after a two-day induction, on July 13, 1999. The physical pain of my labor was infinitely multiplied as I cried out in anguish, “This is so pointless!” Craig cut the cord. Wilder was 6 pounds, 12 ounces, with a full head of hair and a perfect button nose, as you can see.
The ‘1-2 punch’ of stillbirth
There was little recognition of the trauma I had suffered, let alone what it might mean for a future pregnancy. I received a piece of paper with a list of local support services and a pamphlet whose title skewered me: “When Hello Means Goodbye”.
Stillbirth gives a ‘1-2 punch’. First, there is the crazy grief of bereavement, and then there are the follow-on effects. For me, these started immediately after Wilder’s death, when our subsequent pregnancy journey began. Dear but ignorant friends told us, “It was meant to be”, and “It’s okay, you can have another baby,” as though that would magically obliterate the actual child I had borne.
There is no expiration date on grief. Each of us is unique and precious, and just because we could never know Wilder’s uniqueness does not erase this fact. Nonetheless, I desperately wanted a live baby and wanted to get pregnant again immediately.
Why did our son die?
We were determined to find out what had happened to Wilder so that we could prevent another tragedy. Craig and I had blood tests done. Nothing. We made the wrenching choice to allow an autopsy to be performed on Wilder’s body – maybe that would give us some answers. Nothing, other than the cruel enduring worry over whether his body had been respected and treated gently.
We were advised finally to consult with a perinatologist. We eagerly prepared “The List” for our meeting with him. On it, we included every factor we could possibly think of that might have killed our son. In the event, the perinatologist accepted our piece of paper, glanced unseeingly at it but did not even read it, and told us that “sometimes these things happen”. A poster child for fatalism about stillbirth in healthcare professionals!
Ultimately, we have had to live with not knowing why our son died. This fundamentally shook my confidence in what science and medicine can do for me.
The short-lived joy of being pregnant again
I became pregnant again almost immediately. I was full of joy but it was short-lived. Where my first pregnancy was thrilling, secure, and joyful, my second pregnancy was wooden and defenseless. If death could strike randomly once, it could do so again, and there was apparently nothing I could do to stop it.
We again elected to return to the States for the birth, to the same hospital where Wilder had been born dead. I asked for extra monitoring and was told it wouldn’t make any difference but I got it anyway. Wilder had died at 38 ½ weeks. I could not bear to go past this date and asked for early induction. My understanding obstetrician allowed it.
One reason I wanted to return to Mt Auburn was my bereavement nurse, Patty Campbell. Patty was with us when Wilder was born and she was the only person I connected with during my heartbreaking labor. She put Wilder in my arms. She took our precious photos of him. She asked his name, and when it was time, she asked if I was ready to let him go, and she understood when I could not answer her, because what mother could ever answer “yes” to that question. I needed her there when our next child was being born, because maybe that one would die too.
Zimri Bhai – little brother
Zimri was born on August 7, 2000. Apparently, he was born with the cord around his neck. It took a while for him to cry. I wasn’t surprised. I felt grim.
Then he cried and Patty brought him to me but I couldn’t smile at first. I felt solemn and icy and unemotional. I felt that he was probably going to die. Patty kept at me until I kissed this new living baby and I did smile then. Zimri’s middle name, Bhai, is the Nepali word for “little brother”.
It took me months to call the new one by his name. I probably accepted that he was actually going to live when he was about six months old.
I had two more pregnancies with two more living babies, my sons Kai and Ilem. Each pregnancy was less wooden but with the specter of possible death ever-present. No one ever again can tell me “it will be okay”, because I know that sometimes it isn’t.
What we still need to know about pregnancy after stillbirth
This Cochrane Reviews are systematic reviews. In systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research. More is important first because its very existence makes a statement to the healthcare community that subsequent pregnancy after stillbirth must be an area of concern. Subsequent pregnancy is not a cure for the trauma of stillbirth. It’s its own new and hugely complex life event.
Today we have a much better understanding of how stillbirth affects families and communities than we did in 1999, when my son died, but there is so much more work left to do, as illuminated in this review.
“It wasn’t meant to be” and other platitudes are not helpful. There is always a cause and it’s science’s job to find out why. We need to know the causes of deaths to help families understand and to help provide care in subsequent pregnancies. As this review shows, though, research on medical interventions to reduce the risk of recurrent loss is incredibly limited. Worse yet, in my view, is the near-complete lack of research on psychosocial interventions that can help women and their families navigate subsequent pregnancy, childbirth, and life with living children beyond.
I am permanently scarred by Wilder’s death. I and my loved ones have done our best to make our way and seek help and advice, but it has sometimes been a hard road. The medical community needs to understand that parents have unique needs in subsequent pregnancies, yet as this review shows, more research is needed to know what’s helpful for different types of families and situations. For instance, for me, planned early birth was crucial (none of my kids went past 38 ½ weeks, thanks to understanding doctors in three countries), and yet this brings its own risks, so we need more research to help understand and compare the risks and benefits of this A treatment, procedure or programme of health care that has the potential to change the course of events of a healthcare condition. Examples include a drug, surgery, exercise or counselling. More.
Wilder’s 20th birthday would have been July 13, 2019, around the time I started writing this blog entry. My three living sons remember him every year as they tend to him on the family altar, a practice we learned from our time in Vietnam. Wilder died so long ago, and yet my trauma remains with me, always just below the surface. This important review illuminates the complex mix of actual tragedy and potential joy that is subsequent pregnancy after loss, the woeful state of knowledge about what can help families, and the importance of action.
Some support groups
Update (September 2020) – you can make your voice heard!
The Stillbirth Advocacy Working Group (SAWG) is a group of bereaved parents, clinicians, researchers, and others who are interested in raising awareness of stillbirth globally so that we can help end preventable stillbirths and ensure appropriate respectful care when these deaths do happen. SAWG is co-chaired by the International Stillbirth Alliance (ISA) and the London School of Hygiene & Tropical Medicine (LSHTM).
SAWG is compiling a list of Stillbirth Spokespersons– individuals with personal experience of stillbirth willing to raise their voices to increase awareness. Stillbirth Spokespersons may be parents, other affected family members, midwives, other clinicians, counselors, or others with personal experience of stillbirth. SAWG will maintain the Stillbirths Spokespersons list as a resource for the media and other public and private organizations such as United Nations agencies who wish to raise awareness of stillbirth through including the voices of those affected. If you wish to volunteer to be added to the list of Stillbirth Spokespersons, please fill in this brief survey.
Please contact SAWG co-chairs Susannah Leisher firstname.lastname@example.org or Hannah Blencowe email@example.com if you have questions about this survey or are interested in joining SAWG. Thank you!
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Reference and further information:
Wojcieszek AM, Shepherd E, Middleton P, Lassi ZS, Wilson T, Murphy MM, Heazell AEP, Ellwood DA, Silver RM, Flenady V. Care prior to and during subsequent pregnancies following stillbirth for improving Outcomes are measures of health (for example quality of life, pain, blood sugar levels) that can be used to assess the effectiveness and safety of a treatment or other intervention (for example a drug, surgery, or exercise). In research, the outcomes considered most important are ‘primary outcomes’ and those considered less important are ‘secondary outcomes’. More. Cochrane Database of In systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research. More 2018, Issue 12. Art. No.: CD012203. DOI: 10.1002/14651858.CD012203.pub2.
Sands is a stillbirth and neonatal death charity providing support, as well as a list of organisations for anyone affected by the death of a baby: https://www.sands.org.uk/usefullinks
Susannah Hopkins Leisher and Aleena Wojcieszek have nothing to disclose.
Page last updated 25 September 2020