GIFT-Surg researchers collaborated with charity partner Twins Trust to create a series of illustrations explaining rare medical conditions that can occur during twin and higher-order pregnancies.
The public engagement project aimed to support patients’ and clinicians’ understanding of four pregnancy complications: Twin-to-Twin Transfusion Syndrome (TTTS), Twin Anemia Polycythemia Sequence (TAPS), Twin Reversed Arterial Perfusion syndrome (TRAPs), and selective Fetal Growth Restriction (sFGR).
Led by the GIFT-Surg Public Engagement Officer, Bella Spencer, GIFT-Surg researchers provided sketches and comments to guide designer Alison Cummins to develop the first draft of the illustrations, which were then presented at a workshop attended by Twins Trust community members and GIFT-Surg researchers for feedback. The workshop also provided an opportunity for researchers and parents to learn from each other’s expertise and lived experiences.
The illustrations are featured on the relevant pages of the Twins Trust website, under Complications and will soon be released in the form of an online booklet.
Andrew Melbourne, Senior Lecturer at King’s College London and lead researcher on the project said: “It is great to see the knowledge and experience built by the GIFT-Surg project supporting and developing something that will be useful to parents and professionals. This has also been a great opportunity to see the design process in action, progressively incorporating the feedback from several different partners to develop the final illustrations.”
Natasha Fenwick, Family Crisis Support Officer & Research and Resources Officer at Twins Trust said: “We know that healthcare professionals don’t always have the specialist knowledge to be able to accurately diagnose these rare conditions, so as well as supporting them, we wanted to create something that would give parents the information they need to understand what to look out for if their pregnancy is at risk, and how it may be managed if they are diagnosed with one or more of these conditions.”
TTTS, TAPS and TRAPs are conditions that can occur in monochorionic pregnancies (when multiples share a placenta). TTTS is characterised by an uneven distribution of blood between fetuses – one (the recipient) receives too much, while the other one (the donor) too little. It can have serious consequences to the babies and following a diagnosis, the pregnancy needs to be monitored very closely.
TAPS and TRAPs are forms of TTTS. In TAPS, the transfer of blood between twins happens slowly, through very small blood vessels, depriving the donor twin of red blood cells and oxygen. TRAPs occurs when only onefetus develops normally, but the undeveloped one continues to grow due to the presence of blood vessels in the placenta connecting them. This puts a strain on the normally developing baby.
Selective fetal growth restriction (sFGR) is a form of growth restriction, which occurs when one baby is significantly smaller than the other (or others).
“The project provided a great opportunity for GIFT-Surg researchers to listen to and learn from parents’ experiences. It brought together researchers from multiple career stages – from PhD students to clinical research fellows – to share their expertise and develop their ability to convey complex concepts in an engaging and accessible manner.”
Bella Spencer, GIFT-Surg Public Engagement Officer