Traditionally, health care advocacy groups, like ours, begin with people fighting to have established clinical guidelines followed. But what happens when you’re starting from scratch, and there are very few established clinical guidelines, and an establishment that refuses to accept research?
Starting at the beginning.
In 2010, Dr. Kypros Nicolaides said:
“There is NO diagnosis of twins. There are only monochorionic twins or dichorionic twins. This diagnosis should be written in capital red letters across the top of the patient’s chart.”
Traditionally, the announcement of a multiple pregnancy brings a lot of emotions. Joy, fear, excitement, anxiety, amazement, and sometimes sheer terror. A multiple pregnancy is a true test of emotions and stress levels.
But maintenance of a twin pregnancy is not always as black and white as it seems.
Not all multiple pregnancies are the same.
Changing perceptions.TAPS Support was founded by parents affected by TAPS and passionate researchers. Our Mission is simple – ensure that a standardized set of clinical guidelines is adopted and implemented on a global level, to be used for screening, diagnosing and treating monochorionic twin pregnancies, while making TAPS education a priority for all providers and parents involved.
Our team wants to make sure you ask the right questions, get the right answers, and most importantly, get the right care and diagnosis. We aim to connect you with the right networks, the latest research while creating a place where you can come together with others who can relate to you and your unique experiences.
But what we really want is to change the perception of TAPS across the medical world. We believe that everyone is entitled to a basic standard of care that includes correct screening for TAPS, TTTS, sIUGR, and other complications. We want to see every monochorionic twin pregnancy file clearly labeled in ”red capital letters.”
Most importantly, we want to see a change in the medical world. TAPS has so many myths surrounding it and is often dismissed as a mild disease, or worse, as untreatable. So, many health care teams are not up to date with the latest research and instead rely on old, outdated clinical guidelines, which results in inappropriate decisions and devastating outcomes.
Leading the change
Advocacy starts with asking questions and challenging the status quo. Parents need to be empowered to walk into appointments and ask questions of their teams. They need the medical jargon broken down into everyday language, and most of all, they need to have confidence that the person they are trusting to manage this complicated pregnancy is up to date, and informed on advancements in research.
Change begins with breaking down the divide between doctors and patients and having open, honest communication. Patients need to feel confident they are getting the right answers, the most up to date treatment, with all available treatment options presented to them. Doctors need to be honest with their patients and are obligated to keep up to date. Most importantly, they need to be the ones who write “Monochorionic Twins” in red at the top of their patients’ files and to be the ones who deliver not only a minimum standard of care but an exceptional standard of care that places safety first.
TAPS Support is about fostering that change and bridging the gap between health care providers and patients, and ensuring that routine TAPS monitoring becomes standard.
After all, having twins isn’t always black and white. Sometimes you have to see red to make a change. #tapssupport #tapsisreal #makeadifferenceTweet
To join the conversation, visit our Facebook group or follow us on Instagram or Twitter. Read more about our Mission and Vision here, or contact us.