I am often asked some very difficult questions about the medical community’s efforts to prevent stillbirth and other poor pregnancy outcomes.
- Why do I have to have 3 miscarriages before they will do any tests?
- Why was my doctor willing to induce me at 40 weeks once he knew my baby had died – but he wasn’t willing to do it 3 days earlier when my baby was still alive?
- Why did my doctor recommend tests that cost thousands of dollars after my daughter died, but didn’t want to order much less expensive tests to look for potential problems earlier?
- When I asked my doctor about causes of stillbirth, he said drug use and obesity are the primary causes. It doesn’t make sense to me that they say stillbirth isn’t caused by something the mother did – but the causes they give us are the mother’s fault.
- I received wonderful care in my rainbow pregnancy, but why did my son have to die before I could get this kind of care?
- Who decides what tests are appropriate or worth the money?
In general, I don’t have very good answers for them.
Some questions can’t be answered without more information about the situation and the medical decision making process, but many are related to the policies and finances in health care. In most cases, the providers gave the answer or acted as they are taught and as they are expected given the standard of care set by their professional organizations and local institutions. That doesn’t make it easy to explain to a family that policies determine which conditions or babies are worth the additional cost and risk. It is especially challenging when policies may be in place because of or despite the lack of solid research into the issue. And, of course, hind sight makes every decision that weighs financial costs against the life of a specific child look horrible.
This is obviously a multi-faceted systemic and societal issue. As such, it will take the cooperation and concerted efforts of all of us to make changes we can be proud of. We need:
- recognition that many of these deaths are preventable
- better awareness of the statistics, risk factors, and the need for more research and education
- expectant families to be informed and educated participants in their health care and any medical decision
- medical researchers to continue and expand their work aimed at prevention options
- health professionals to challenge practices based on “the way things have always been done”, seek out education and new research, and practice using their clinical judgment
- health professionals with curiosity and desire to improve the rates of poor outcomes to at least the level of the countries with the lowest rates – but also to surpass them
- community leaders and advocates who value and consider the perspective of families when creating policy and making decisions
- additional resources dedicated for researching the prevention of poor pregnancy outcomes and their sequelae
Despite the huge challenge, I am optimistic! In the 12 years since my son was stillborn, I have seen significant improvements and advancements. There is a momentum that is exciting and worth encouraging.
We can all do something to make 2017 a year that started even more change toward prevention!
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Plus – Star Legacy is continually working on more research efforts and will hopefully have some exciting announcements in the near future. Our hope is that everyone with the strength and courage to share their experience for stillbirth prevention has the opportunity to do so!