Pregnancy after stillbirth: experience and evidence gaps

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’, you can read the rest here.

Aleena Wojcieszek is a researcher at the National Health and Medical Research Council (NHMRC) Centre of Research Excellence in Stillbirth at the Mater Research Institute of the University of Queensland, Australia. She recently submitted her PhD on informing clinical practice for care in pregnancies after stillbirth and co-leads the centre’s subsequent pregnancy research stream.

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 risk 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 and found only 10 trials with data 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.

Susannah pregnant with Wilder, looking happy

Me at home in Hanoi, Vietnam, about 7 months pregnant with Wilder, 1999 (taken by my husband Craig)

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.

Me holding Wilder just after he was born, at Mt Auburn Hospital, Cambridge, Massachusetts, July 13, 1999 (taken by my father, John Hopkins)

Wilder Daniel Leisher, July 13, 1999 (taken by my bereavement nurse, Patty Campbell)

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”.

Susannah holding Zimri, looking solemn then smiling

(L) Me gravely holding Zimri just after he was born on August 7, 2000, with my sister Alyson Hopkins solemnly looking on, and my bereavement nurse, Patty Campbell, examining Zimri (taken by Craig); (R) Me finally smiling at Zimri, with my mother Hilary Hopkins looking on (taken by Craig)

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 Review 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 intervention.

Leisher boys by their brother's special shelf at home

My sons Zimri (left, standing), Ilem (right, standing), and Kai (sitting) tending their eldest brother Wilder’s special shelf on his 18th birthday in 2017 (taken by me)

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.

Join in the conversation on Twitter with @aleenawoj @shleisher @CochraneUK #MaternityMatters or leave a comment on the blog. 

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. Cochrane Database of Systematic Reviews 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.


Susannah Hopkins Leisher

About Susannah Hopkins Leisher

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Susannah Hopkins Leisher is a fourth-year doctoral student in epidemiology at Columbia University, focused on stillbirth. She is also an honorary research fellow at the Stillbirth Centre for Research Excellence at the Mater Research Institute of the University of Queensland, Australia; a board member of the International Stillbirth Alliance; and co-chair of the Stillbirth Advocacy Working Group founded by WHO’s Partnership for Maternal, Newborn and Child Health. Prior to moving to perinatal epidemiology, she spent over 20 years working on global poverty alleviation in Asia, Africa and Central America, including ten years living and working in Vietnam. Ms. Leisher lives in New Jersey with her husband Craig and three teenaged sons. She is also the mother of Wilder Daniel, stillborn at 38½ weeks on July 13, 1999, with no cause found.

12 Comments on this post

  1. Avatar

    I had my baby girl at 40+2 , I had a completely normal pregnancy but was booked in for induction at 40+1 because my 2 previous pregnancies (although babies both fine and healthy) I was high risk of bleeding. All through my third pregnancy I waS so anxious and worried I would die, I never once worried about my baby girl emma. I go over and over it, I completely blame myself in lots of different ways. Someone always has an answer for one way I think I caused it and then I think of another. It’s been 2 weeks since I had to have her cremated and I am just struggling. She was our last baby and I’m just utterly devastated. I don’t know how you go on from this, the only thing keeping me going is my other two and even then I’m just hopeless. How do you go on to have any more when she was fine the full pregnancy! I’ve had bloods done and allowed the placenta to be checked but we declined a post mortem for Emma’s sake! I just miss her terribly and having her in my belly, we got to spend some time with her after and have pictures but I just want her! She was perfect and fully grown and beautiful, I just don’t understand

    Stacey gibb / Reply
    • Susannah Leisher

      Dear Stacey,

      I am so so terribly sorry for your loss of your beautiful Emma. My heart goes out to you. This time period in the immediate vicinity of your devastating loss is debilitating and raw. There is nothing to do but put one foot in front of the other, survive, and keep our babies’ memories green. Simply by sharing your story here you have done that. Emma is in my heart now.

      One thing that helped me enormously to manage was finding my dear friend Lisa who had just suffered a loss of her daughter Emily very similar to my loss of Wilder. We got each other through the first few years, and remain special friends, although in 20 years we have only met face-to-face one time. Perhaps there is a support group in person or online that may give you this precious resource.

      Courage and strength to you,

      Susannah

      Susannah Leisher / (in reply to Stacey gibb) Reply
  2. Avatar

    Thank you for sharing, it helps. My husband and I had a perfectly healthy pregnancy until 35 weeks, 2 days. I passed off the decreased movement as normal/stress-related because of my job as a nurse. My husband (who is a MD) wasn’t too concerned. We waited too long to get checked. Zachary was born 3/13/19. I wish everyday that I could hold him and watch him grow. My heart aches some days more than others, but I always miss my friend.

    Shelby / Reply
    • Susannah Leisher

      Hello Shelby,
      I am so sorry for the death of your son Zachary. There are really no words. My heart goes out to you and your husband.
      With warm regards, and wishes for strength,
      Susannah

      Susannah Leisher / (in reply to Shelby) Reply
  3. Avatar

    Thank you so much for your important work.
    My parents had two living children followed by a stillborn son in the Netherlands in the 1970s. It horrifies me to think that they were strongly advised not to look at him, that they didn’t get to name him or have his body buried/cremated. He was born prematurely (I don’t know exactly, but probably between 32 and 35 weeks) and the only explanation my parents ever received for his death was that cycling a lot may have caused the membranes to break — implicitly and ridiculously placing blame on my mother.
    The above is all I know about my parents’ trauma. They hardly ever talk about it, and certainly not voluntarily. I was born about two years after the stillbirth. My two older living siblings have calm and emotionally stable personalities. I do not: I have ADHD (including trouble regulating my emotions and moods), buckle under stress, and have suffered from depression and anxiety. While I realize that a thousand other factors could be involved, I do wonder sometimes if the stress my mother doubtlessly experienced during her last pregnancy influenced my developing brain.

    With all this in mind: I’m happy that family experiences around childbirth receive scientific attention. Thank you so much.

    Elisabeth / Reply
    • Susannah Leisher

      Hello Elisabeth,
      Thank you so much for your comment. Your parents’ experience sounds so very hard. These days the Netherlands does some wonderful things for stillborn babies and their parents, such as parents bringing their babies home for a while to say farewell. My doctoral research is on the relationship between maternal stress and stillbirth, so your thoughts are really interesting to me. There are so many factors involved, and the bottom line is that we still know very little about why babies die.
      With warm regards,
      Susannah

      Susannah Leisher / (in reply to Elisabeth) Reply
  4. Avatar

    Thanks for sharing just lost my baby boy .it’s more than a week now ,can’t still believe it happend to me I have done a lot of digging and I can’t even understand how it took place.Brian I named him 25/08/2019 the best day and worst day of my life.All I have in mind now it’s how to have a baby an this time a living one.thanks again sites like this gives hope

    Mariama / Reply
    • Sarah Chapman

      Hello Mariama, I am so sorry you lost your precious son Brian… Thinking of you and your family.
      Warmest wishes,
      Sarah [Editor]

      Sarah Chapman / (in reply to Mariama) Reply
    • Susannah Leisher

      Hello Mariama,
      I am so sorry for the loss of your son Brian. I have been there. Sending you hope and strength.

      Susannah Leisher / (in reply to Mariama) Reply
  5. Avatar

    Excellent article. I feel like so much is lacking when it comes to treating the whole mother (not just physically) when it comes to pregnancy after loss.

    Teale Yeilding / Reply
  6. Avatar

    I am so sorry for your loss. Thank you for so openly sharing yours and Wilder’s journey; it will help others.

    Muriah / Reply
  7. Avatar

    Excellent. Very accurate and honest. Should help others going through the same thing.

    Bronwyn Cooper / Reply

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