by Lindsey J. Wimmer, MSN,CPNP, CPLC
October is National Pregnancy and Infant Loss Awareness Month. It has been a wonderful time for families to share their stories and encourage others to do the same. But, we and others often wonder if this accomplishes anything other than making ourselves feel better for telling the world about our children. We hear that awareness is important – but why?
There can be a therapeutic value to acknowledging your pain or sharing your baby’s story. But there are also many common thoughts that have been expressed to us about the greater value:
- Do we just want people to feel sorry for us?
- Awareness won’t bring my baby back.
- I’m not a politician, researcher, or rich philanthropist – so I can’t do anything to help.
So, why do we even bother working so hard to raise awareness?
Families who are surrounded by friends, family, co-workers, neighbors, and a society that has a solid understanding of what they are going through will feel more supported. It isn’t as easy for their grief to be brushed aside or met with platitudes if there is true knowledge about the facts, incidence, and experience.
It is also very hard for newly bereaved families to have to explain to people what stillbirth or miscarriage or any other condition/cause of death is. It’s hard to admit to ourselves that this is what we are now living, but to say it out loud and include the definitions and facts to those who didn’t know these losses existed is just too much for many people.
There is a stigma around pregnancy and infant loss and many families feel isolated in their grief. One in four women will experience this type of loss in their lifetime, so we know they are not alone! But without permission to speak up about it and know others who have been in similar shoes, they don’t have the support they might need.
There are several studies and experiences from around the world that indicate women who are aware that pregnancies don’t always have a fairytale ending – are actually more likely to have a good outcome! There is something protective about that knowledge that we can’t always explain. This obviously isn’t enough to rely on and it doesn’t keep all pregnancies safe, but it does help many.
It can also help motivate or inspire women to go that extra step toward their own health and pregnancy health. I’ve worked with many women who ‘knew’ on some level that they should lose weight, quit smoking, go to all the medical appointments, not drink alcohol, etc. But it’s hard to do all those things when you don’t think it will make a difference in the outcome. It’s much ‘easier’ to maintain the will power or dedication if you are aware of the increased risk you hold for yourself and your baby if you don’t make an effort.
Similarly, it can empower women who may have concerns or symptoms that they would otherwise ignore or talk themselves out of. We don’t want to be ‘paranoid’, seem like a hypochondriac, make a big deal out of nothing, etc. But, when women know that pregnancies can have poor outcomes, they might be more willing to speak up about those concerns. In some cases, it may even motivate women to educate themselves on their risk factors and what can be done to reduce those risks.
One of the most common concerns I hear from health professionals who care for pregnant women is that they “don’t want to scare all these new moms”. It’s difficult for them to bring up the fact that an unborn baby could die or any of the other bad things that can happen during pregnancy and delivery. While this is not a great excuse, I do understand that many expectant mothers don’t appreciate the candor and information from providers who do this part of their job. If all families are already aware of the risks, it is much easier for them to bring it up. In fact, the families may ask the providers before the providers have a chance to. When a family has a concern, the provider may address their concerns differently if there is awareness of the potential outcomes or the family is educated about the situation. Increased awareness improves the health professionals’ ability to partner with the family throughout the pregnancy and as any issues arise.
It’s always difficult for me to think about financial considerations when we’re talking about the life of a baby – but it’s impossible to discuss any medical issue or treatment without evaluating the costs involved.
Bereaved families know of the many costs they suddenly encounter when their baby dies. It can include hospice care, emergency medical treatment, autopsies, burial or cremation, headstones, time off of work, counseling, etc. If our society has a greater understanding of the burden on these families, there may be increased effort to assist with these costs.
Awareness of all the issues – including financial – can also put societal pressure on insurance companies and other legal/financial parties. For example, insurance companies might be more willing to pay for additional ultrasounds or monitoring during pregnancy, cover the costs of autopsies for stillborn babies, offer life insurance benefits for the family who has all other living members covered, etc.
There are a couple of studies recently that have reviewed the financial costs of these tragedies and any pregnancies/health issues that may follow. The numbers are staggering and significantly higher than the costs after healthy, live births. Awareness of those numbers alone could encourage a different approach to obstetric care/benefits covered by payers.
The finances can also impact future research. Research is an expensive industry. The return can be amazing, but it often does not have a direct, financial return (particularly when researching pregnancy and infant loss). Therefore, there is rarely incentive for significant money to be spent on research in this area. The scattered organizations or individuals who do contribute their funds often do so out of a personal passion or deeper understanding of the issue.
Greater awareness in our society about pregnancy and infant loss can make it easier – maybe even a positive! – for large corporations, wealthy organizations, and influential people to extend their generosity to the researchers who are working toward prevention and improved bereavement care. It can also support legislators and policy makers who advocate for families by encouraging government/legal entities to contribute toward these goals.
Awareness can be difficult and slow. It may bring up uncomfortable topics or involve awkward conversations. But it isn’t even close to the discomfort of families who suffer from these tragedies. That makes it worth it to put the energy into awareness so that we can prevent or reduce the pain felt when a pregnancy doesn’t have a happy ending. And we don’t have to be in a position of power or significant wealth to help!
How can you create awareness?
- If you experienced the death of a baby during pregnancy or infancy, tell your story! Don’t be afraid to let others know what that means to you.
- If you are pregnant or wanting to become pregnant, ask your health professional about any risk factors. Let them know you are aware of many poor outcomes and ask for their help to reduce your risk.
- If you are a health professional, don’t be afraid to tell expectant families, or all patients, about their risk factors and what they can do to reduce those risks. Don’t minimize concerns that mothers bring to you and investigate any symptom or risk factor thoroughly. Know that it’s ok to tell people what can happen or what you’re trying to accomplish with your care protocols.
- If you know someone who has experienced pregnancy loss or infant death, tell them you’re thinking of them and that you remember their baby. Make sure they know they are not alone.
- If you are a policy maker, community leader, industry professional, employer, journalist, politician, grantor, educator, etc – use your networks and influence to make life better for the people around you who may be grieving. You can also use your position to encourage policies that improve the financial considerations of families; support research and education; and reduce the stigma associated with these tragedies.
Things we can ALL do!
- Use #NeverBeStill, #BecauseEveryPregnancyDeservesAHappyEnding to show your support for grieving families and to honor babies gone too soon.
- Apply the Star Legacy Foundation #NeverBeStill frame to your social media profile photo. Click here to learn how.
- Share awareness messages from Star Legacy Foundation on your social media pages.
- Attend an awareness event near you!
- Sign up for the Star Legacy Foundation e-newsletter to learn more about future awareness activities and opportunities!
Awareness isn’t limited to October, and it isn’t limited to groups that recognize October as Pregnancy and Infant Loss Awareness Month!
To be most effective, awareness needs to happen 12 months of the year! The benefits need to be experienced all year long and we never know when a pregnant mom or community leader is paying attention. We also need to share the messages with our friends and family who may not know about these losses. It is fantastic to use awareness activities to support each other, but the full benefits of awareness will be realized when people who have never been touched by these tragedies learn the information.
Thank you for helping us spread awareness!
Thank you for continuing this important mission – having our great grandson, Benjamin, remembered, and hoping this tragedy can be avoided for another family……….very difficult conversations ” we will never be still”!
Lindsey you say it all so well and awareness is so important for all the reasons you have written about thank you star legacy for leading the wayb