이 에피소드에 관해
Welcome to the fourth episode of season four of Conversations in Fetal Medicine, in conversation with Stephanie Ernst, founder of the charity TAPS Support.
Stephanie's bio:
Stephanie Ernst: Twin mum, TAPS nerd, expert patient and Australian in the Netherlands (self identified as a clogaroo).
After delivering monochorionic twins at 31 weeks,, Stephanie struggled to find quality information about Twin Anemia Polycythemia Sequence (TAPS), the diagnosis she had received for her daughters. This led to the creation of a Facebook community, and later grew to the charity TAPS Support,
Her aim is to help continue research into the complications of monochorionic twins, through actively raising funds for research projects, supporting researchers of the future, and talking with professionals about the perspective of parents with complicated twins pregnancies, and the additional considerations they may need. (And promises she's not out to start fights or arguments, she just has a lot to say). She also has a passion for breaking down medical jargon, and helping families understand their diagnosis through giving good quality research in everyday terms. Patients should be an active part of their own care team, and need the resources and support to do this.
She actively publishes research with two other TTTS mothers, and writes and speaks regularly on twin-related topics, as well as many other subjects, and works in marketing, specifically for companies dealing with clinical research, training and coaching.. In her spare time, she hangs out with the coolest twins ever (her daughters) and her long suffering, very patient husband, and drinks a lot of coffee (and doesn't mind the occasional G&T!).
Find a portfolio of her work here: https://stephanieernst.nl/portfolio/
For more information on TAPS Support, visit https://www.tapssupport.com/
Additional resources:
ICOMBO Declaration of rights & statement of needs for twins and higher order multiples: https://icombo.org/wp-content/uploads/2024/01/Declaration-of-Rights-2022.pdf
European Standards of Care for Newborn Health: https://newborn-health-standards.org/
NICE Guidelines for Twin and Triple Pregnancy: https://www.nice.org.uk/guidance/ng137
Podcast information:
We have not included any patient identifiable information, and this podcast is intended for professional education rather than patient information (although welcome anyone interested in the field to listen). Please get in touch with feedback or suggestions for future guests or topics: conversationsinfetalmed@gmail.com, or via Twitter (X) or Instagram via @fetalmedcast.
Music by Crowander ('Acoustic romance') used under creative commons licence. Podcast created, hosted and edited by Dr Jane Currie.
