Twenty-three years ago I was a busy mother of two active toddlers. I had experienced years of infertility followed by extremely high-risk pregnancies and preterm births but my sons were born healthy and thrived. This was in no small part due to my physician’s excellent skills, home and hospital care and my determination to do everything in my power to be the most valuable member of my medical team. Only one thing was missing… I had no peer support until my doctor linked me to a former patient. From that day forward I started supporting women with complicated pregnancies because no one could relate better to the fears and frustrations than someone who has been there. That’s how Sidelines got started- women all over the country were reaching out to others to help in this most critical time. With the help of my partner Tracy Hoogenboom, mother of 2-year-old triplets and an infant, Sidelines became a national network of 30 chapters in just 12 months.
The Internet allowed us to restructure and improve our organization. We were able to serve more patients and match volunteers more efficiently. Email support became more in-demand than our phone support. Information could be centralized and immediate. We were the very first non-profit to provide support via email and have been the model for many organizations that followed our lead.
Sidelines representatives have presented to the FDA, members of the Senate and Congress, medical associations and other organizations to represent the unique needs of women with complicated pregnancies. 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, and we need aggressive proactive measures so that babies are not born too soon, too small, too sick.
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 you have no control over all the things that are happening to you and when you feel powerless, you feel scared, angry and depressed. Know that KNOWLEDGE IS POWER, and it will give you back some of the control you've lost.
It is an honor for us to support you during your high-risk pregnancy and helps us answer the question we all asked God at one point, "What possible purpose could you have for putting me through this?" We'll be cheering you on from the Sidelines.
Candace Hurley, Executive Director