By Shauna Libsack, who shares her personal story and how she is standing up to prevent stillbirth for families in the future.
First You Cry…Twice
Fifteen years ago we became grandparents for the first time. I felt proud of my daughter and her husband and fell in love with my new grandson. But this was not going to be your typical journey into grandparenting. You see, our grandson was born still–full term after a textbook pregnancy.
First, shock and disbelief filled our days. Then came the doubt and the anger, and eventually, just profound sadness. The primary emotion that continues to this day is the anguish of watching my daughter, my own firstborn, grieve the loss of her firstborn.
When you raise your children, you are there to pick up the pieces, rationalize when logic fails, reassure them, encourage them and set them on their way again. But no guidebook exists for what to do when your child must bury her baby. You want to kick and scream at someone, even God, but you realize that isn’t the right answer either. I could always fix the boo-boo with a bandaid or a kiss when she was a little girl, but absolutely nothing could fix this. There she was, shattered to the core and almost unrecognizable to me. This accomplished, bright focused and amazing young woman was but a shell of the person I knew.
Where do you start? What do you do? Where the hell are the books about this? What is the right thing to say or do? There were no answers. Each and every one of us were stumbling through those days. I wanted to smother and protect her, but was that the right thing to do? The helplessness overwhelmed me.
All the questions, but no answers
Eventually you put one foot in front of the other, keeping an eye on your grown children hoping you’ll know the right thing to do or say when the time comes. I watched as the guilt set in very early on. She blamed herself for everything and even said, “keeping this baby safe was up to me and God and one of us screwed up.” Was it the busy day at work? Was it what she ate? As a health professional herself, she would ask, “Why didn’t I know this could happen in this day and age? Was I asleep that day in school? I should have known.” There seemed to be more questions than we could ask and simply no answers.
That drove us to the medical literature. Why does this still happen? Where is the research? Why didn’t anyone tell me this was even a remote possibility? Digging for evidence only increased our rage, as we found just a few studies by a couple of individual health professionals with a personal interest in stillbirth. At that point, absolutely no federal funds had been allocated for this type of research.
The numbers we found were staggering. This was not “more rare than being hit by lightning twice in the same day” as her obstetrician told her. 1 in 160 pregnancies end in stillbirth in the US–that is not rare. Why isn’t anyone talking about this? We never hesitate to declare emergencies with flu or measles outbreaks or more recently with after 8 people have died after vaping. Those are all awful and deserving of the attention, but why haven’t we declared stillbirth an equal public health crisis?
The other astounding thing was the number of people that came out of the woodwork with their own stories–that happened to my neighbor, my brother and his wife, my boss–you name it. It seemed that almost everyone knew someone who had walked this nightmare, and they all thought they were one of those extremely rare occurrences.
Grief became passion
In time grief became passion. This should not be happening. We know that it is unrealistic to expect that every pregnancy will end happily. We felt frustrated when we found out that other developed countries have much lower rates than the United States.
Who is responsible for the lack of action? Who should be leading this charge? What is the message? Can it be done? I believe that we all have a role to play.
The healthcare profession needs to resolve to partner with moms to prepare them with instructions on how to keep baby safe and what can go wrong. And yes, they should tell them there is a risk of stillbirth! They need to use their own critical thinking skills and do the right thing, not what some hospital administrator tells them to or what the insurance company will pay for. Do the right thing that is in the best interest of mom and her baby, no matter what. Oh, and stop patronizing with the old wives tales. Babies do not slow down late in pregnancy, drinking something sweet will not wake up your baby, and so many more. And finally, the obstetrical community should be paying attention to what other countries with far better statistics are doing!
The pregnancy and infant loss community should not retreat into silence for fear of making someone else uncomfortable talking about babies that die. That conversation may very well save someone else from the heartache. Collectively we need to get behind researchers, resolve that ‘sometimes these things just happen’ isn’t good enough. We can do better, but it will take everyone to get where we need to be.
Standing Up to Prevent Stillbirth
Know a pregnant woman? Tell her to get to know this baby early, don’t compare this baby with your previous babies or your mother’s or sister’s or friends’ babies; if your baby’s behavior changes, immediately ask your healthcare provider. Do not second guess your instinct. If your healthcare provider brushes you off and offers the old wives tales, go somewhere else and get another opinion. You are your unborn baby’s voice.
The goal is not to spread fear, but to raise awareness. Our hope is that by sharing our story and advocating for more research and action, we can save other families from the grief that we’ve had to experience.
Shauna Libsack serves as the Director of Operations for Star Legacy Foundation. Shauna became passionate about stillbirth when her first grandchild was stillborn in 2004. She is now retired and devotes her time to stillbirth prevention efforts. Shauna’s work experience includes 30 years corporate education, training, and research. She holds a BA degree in Business Administration/Human Resources from Chadron State College and is certified in adult education, online training, and curriculum design. She is serves as a co-chair of the Action for Stillbirth Awareness and Prevention (ASAP) Coalition, a member of the National Stillbirth Coalition Working Group, the International Stillbirth Alliance, and ISPID. Shauna and her husband, Steve, live in Burnsville, MN.