When my son was stillborn, I was trying desperately to understand how this could have happened. My medical training was failing me in that regard because it made no sense that a healthy baby at the end of a healthy pregnancy in a healthy mother could end so horrifically. I begged my doctor for answers. Her response was that “sometimes these things just happen.”
She didn’t have any better answers than I did. That was the answer she was taught in her training. And she wanted to say something because doctors are supposed to have all the answers.
I was baffled that my health professionals were okay with that response. The truth is that she may not have been okay with it. But, our health care system was content that this was the best we could offer. And she didn’t find that as shocking, horrific, and unacceptable as I did.
Then, I was given some completely false statistics about having a better chance of being hit by lightning twice in the same day than of ever having another baby die during pregnancy. Whether she believed it or not, she sold me. Because it was the answer I wanted to hear.
Several months later, I was pregnant with my second son. And there was an odd hypocrisy about the care I was receiving. Everyone reassured me that this time would be different, that the risk of recurrence was almost non-existent, and that there was no reason for me or my doctors to think or do anything differently from the last time. Except that I was going in for visits much more frequently, had a dozen more ultrasounds, my (new) OB listened to my long lists of questions and shared my concerns, and we all knew I would deliver before 38 weeks (the age when my first son died). If I had nothing to worry about and my odds were so much lower than before – why did I need all this care? Don’t get me wrong – I was extremely grateful and would have lost my mind if I hadn’t been able to have the additional care. But it didn’t add up.
Until my second pregnancy had a scary moment. The short version is that my second son didn’t breathe for the first 20 minutes after his birth. The innocence that I had during my first pregnancy and willed myself to have during my second pregnancy was instantly gone forever. The statistics I’d been given were wrong. I could have easily been planning a second funeral in a year. But I wasn’t because of the additional level of care and monitoring I had received. They told me that the ‘extra’ tests were being done mostly for my anxiety levels and to make me feel better. But they saved my son’s life. To this day, I am beyond grateful that my son is here and thriving.
But, the curse of the bereaved mother is to always wonder ‘what if’. I can’t help but wonder if my first son could have also been saved if I had received the same level of care during that pregnancy. Of course, we’ll never know. But even contemplating the possibility tells me that the answer I was given by my doctor was false. These things may not have to happen.
And then I started talking to hundreds of other parents like me. They got the same answers, were told the same platitudes, and yearned for a better system, too. This is not the problem of one mother, one doctor, or one hospital. It is a systemic and social attitude that needs to change.
It can be difficult for bereaved families to accept that many stillbirths are preventable. We’d love to know that everything possible was done for our baby. And in many cases, that is true. But in many cases it wasn’t. Even more possible is that what might have been done wasn’t yet known. This is the frustrating aspect of medical progress. But progress should always be pursued for the benefit of those who come after us.
At some point, we learned that diets and insulin can drastically change the prognosis of diabetes. We also learned that tobacco causes cancer. We constantly identify new medications that make many conditions more tolerable or curable. There is no doubt that the people who struggled with these diseases in the past would have loved to have this information or technology. But we are grateful that they, their loved ones, and their health professionals used their experiences to learn, to improve, and to commit to doing better. That is one of the best ways I can think of to honor those we love.
The births of my first two children taught me that I needed to use my experiences and their lives to learn more and encourage the medical profession to do the same.
Here are some of the things I have learned…..
- Many stillbirths are preventable. This is especially true in middle and low-income countries, but it is true here in the United States as well. A 2018 study found that, conservatively, 25% of all stillbirths in the US can be prevented. That is roughly 6,000 babies that could be saved!! And I believe that is a low estimate.
- Many countries are bringing their stillbirth rates down much faster than the United States. Earlier this month, we highlighted a presentation given by Dr. Catherine Calderwood as she described the efforts in Scotland recently that brought their stillbirth rates down by 30%! (link to video) As she so eloquently states – “Don’t let them tell you it can’t be done, because it can.”· Pregnant women can help reduce their risk by:
- Monitoring their baby’s movement and reporting ANY change in the baby’s behavior and movements IMMEDIATELY. This includes not only frequency of the baby’s movements, but also strength and pattern. Changes should be based on what is normal for this baby – not previous pregnancies or other people’s babies.
- Sleeping on their side in the 3rd trimester of pregnancy. Women who sleep on their back have been shown to have a higher risk of stillbirth. Poor sleep during pregnancy should not be dismissed as it can also contribute to high blood pressure and other health concerns.
- Trusting their intuition and advocating for their baby. Maternal instincts begin very early. Studies are starting to show that women often know when something is wrong with their body or their baby before medical tests do. We should ask women about these instincts and take them seriously when they are reported. Women should not be made to feel silly or paranoid when they have concerns.
- Know their risk factors! Being aware that pregnancy is not always as simple and easy as we’d like can help encourage women to take care of themselves, be proactive about questions or concerns, be more diligent about following antenatal care recommendations, and advocate for their babies.
- Grab a free copy of our Parenting in Pregnancy brochure for more details about all of the above!
- We can all help support healthy pregnancies by contributing to research to improve pregnancy outcomes. One great way to do that is by enrolling in the Pregnancy Research Project , which is open to anyone (not just loss moms!) who has had a baby in the last 5 years, is currently pregnant, or has ever had a stillbirth (see eligibility details on the website). If you would like to do something meaningful this Awareness Month for someone you know who has suffered a pregnancy loss, pledging to participate in the Pregnancy Research Project (or to recruit others to do so) in their baby’s honor would be a touching and impactful way to show your support.
I wish I had known all these things before my first pregnancy. It would be easy to blame myself for not knowing – because bereaved parents are very good at blaming ourselves. But I know that I did everything I knew to do, and that I cannot be judged by the information and technology of the future.
Additionally, these actions will not eliminate all stillbirths. Sometimes stillbirth happens even when these things are done. We do not have a ‘golden egg’ to save every baby, and I doubt we ever will. Stillbirth is a complex and multi-faceted issue. But, that doesn’t mean we shouldn’t strive for that. And the 6,000+ American families every year that could go home with a healthy baby would definitely agree that these efforts are worth our energy.
A medical system and a society that is working hard toward that vision is one that I can be proud of. Learning from babies gone too soon isn’t always easy, but it is a beautiful way to honor their legacies. And that is what Pregnancy and Infant Loss Awareness Month is all about.