When I co-founded this group in July of 1991 with Laura Maurer of Phoenix, I could not have imagined what Sidelines would become in such a short amount of time. I had been a part of the wonderful national organization for infertility- RESOLVE, and also knew of equally important national groups supporting parents with premature babies, and parents who lose babies. But as far as supporting parents during the one time that there might be a chance to affect the actual outcome, that is, during a high-risk pregnancy, I knew of no community-based group and certainly of no national group that dealt with this crucial time.
This was before the Internet or even fax machines- so hundreds of hours and telephone calls led us to other high-risk moms from around the country who wanted to start local support groups. Within six months of the first seed of an idea, Sidelines had become a national, non-profit organization with 30 chapters across the country.
Within the first year, a family crisis would lead Laura to resign her position as administrative director. This was a huge and critical gap that threatened our very young organization. The perfect replacement was quite obvious to me - Tracy Hoogenboom. Why not? She was already handling our largest chapter (Los Angeles), while managing to be a wonderful mom to young triplets, plus one- 17 months apart!
Sidelines is not something Laura, Tracy, and I did. It is the best example of what women can do working together with conviction and compassion. After 10 years of independent community run chapters, we took a leap of faith and totally restructured our organization. This was a painful experience because some of our coordinators had been with us from day one. But establishing a centralized toll-free number and managing fewer coordinators divided by complications instead of location has proven to be an incredibly positive change. We now are able to serve more patients, match volunteers with them much more efficiently and quickly with much less chance of a mom "falling through the cracks". Our email support is now even more in-demand than our phone support, although we still have a large number of phone patients and volunteers. Our weekly online chats are also very popular. We were the first non-profit to provide support via email and have been the model for many organizations that followed our lead.
Our volunteers have shared some incredible stories. One of them found some Catholic nuns to volunteer blood for a high-risk mom frightened about receiving a needed blood transfusion. A volunteer and her husband traveled three hours to be at the side of a single mom as she labored to deliver her stillborn twins. As a matter of fact, I'd like to acknowledge all the husbands and families of our coordinators and volunteers who appreciate the commitment their wives and moms have made to Sidelines. (My husband Brian and Tracy's husband Tom change into their alter ego "Mr. Mom" with the greatest of ease!)
One of the last things we ever expected was that Sidelines representatives would be in front of the FDA, members of the Senate and Congress, medical associations and other organizations to represent the unique needs of women with complicated pregnancies. We would never have described ourselves as activists. Like you, we're women who worked very hard to have our babies and our single purpose has been to help other high-risk moms. But, right from the beginning, we heard from women who desperately wanted to see more progress made in saving the lives and preserving the health of babies during pregnancy so that fewer children start life in neonatal intensive care units. Letting "nature take its course" has been prescribed to too many of us with devastating results.
For too long, women with complicated pregnancies have not been heard on issues that bear directly on their lives- we need greater access to high quality prenatal care, we need to be informed about our options, we need to participate in decisions made about our quality of prenatal care, and we need aggressive proactive measures so that babies are not born too soon, too small, too sick. Currently Sidelines is engaged in helping write and promote "The Safe Motherhood Bill", a bi-partisan bill which we hope will vastly improve the way complicated pregnancies are researched and treated in this country.
If I could tell you just one thing, it would be this: "Become actively involved in your care". This means learning all you can about your own high-risk condition...ask questions and if you don't understand the answers, keep asking...find out what options are available and what the consequences are of each one...participate in decisions being made about your care. You may feel that right now you have no control over all the things that are happening to you and when you feel powerless, you feel scared, angry, depressed. KNOWLEDGE IS POWER, and it will give you back some of the control you've lost.
Our experience convinces us that there are a tremendous number of extraordinary physicians out there who go the extra mile to educate and inform their high-risk patients. Choose a physician who considers you a partner in the process of treating a high-risk pregnancy. You should not have to settle for less. Feel comfortable in seeking another opinion, or if need be, another physician. (You wouldn't let a mechanic you don't have confidence in work on your car, right? Remember, it's your body, your baby.)
With eleven of the busiest and most remarkable years of my life behind me, I can reflect on the many tens of thousands of "voices on the phone" and emails I have had the privilege of communicating with. Sidelines has made a direct difference in the lives of over 75,000 women, and in a great many of the pregnancy outcomes. Our Web site has had over 1 million hits. These amazing women have made it an extraordinary experience for me and has answered the question that I asked God daily while I was on bedrest, "What possible purpose could you have for putting me through this?" We'll be cheering you on- from the Sidelines...
Candace Hurley, Executive Director
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