A lot of parents and professionals are looking for the same thing: a clear place to read, and a clear place to share. We bring key information and resources together so you can read in your own time, then share a page when you need to.
Visit www.tapssupport.com
#TAPSSupport
Podcast recommendation: Conversations in Fetal Medicine, hosted by Jane Currie. Wide range of guests and topics across fetal medicine. Look for the episode with our founder, Stephanie Ernst, on what matters to patients. Listen: open.spotify.com/show/61tLO... #FetalMedicine
Researchers at the Leiden University Medical Center are seeking participants for a study on hearing loss in TAPS. This survey aims to bridge the gap between clinical data and the lived experience of families navigating this rare complication. www.tapssupport.com/parent-... #TAPSSupport
Word of the week: chorion
The chorion is the outer membrane that surrounds a pregnancy. In twins, the number of chorions helps determine whether the twins share a placenta.
Evidence and further reading:
www.tapssupport.com/ultraso...
www.tapssupport.com/glossary/
#WednesdayWordOfTheWeek
Have an update to share in perinatal care or rare pregnancy complications? New paper, guideline, service change, or project milestone, send it our way and we’ll help spread the word. hello@tapssupport.com #TAPSSupport
#TwinTuesday | Ask Our Community
Have a question you haven’t had the chance to ask yet?
This is a space to ask our community and hear from others with lived experience of monochorionic twin complications. So what’s on your mind? You might not be the only person wondering.
#TAPSSupport
Last week we had the privilege of being at the Twins Trust Professionals Study Day in London. Well done to the Twins Trust and their incredible team for a very successful event!
In case you missed it: The International TAPS Day webinar is available to view online! Visit this link: internationaltapsday.com/in... to see it.
#20YearsOfTAPS
Today, we are recognizing World Alloimmunization Day at TAPS Support. Research into fetal anemia helped doctors assess donor twins in TAPS and informed parts of the diagnostic criteria. We also share respect for experts like the team at Leiden University Medical Center. #Empoweredinpurple
Thank you for being part of this week. We passed 5,000 followers on Instagram, and the posts reached more than one million people. We are taking a short break now, then the campaign will continue with more information, family stories, and events online and in person. #20YearsOfTAPS
TAPS is rare, and no one center is going to answer its biggest questions alone. Families need research that says more than what happened at delivery. That means clearer records, stronger follow up, and centers working closely together. #20YearsOfTAPS
Twenty years after TAPS was first described, research still needs better answers on screening, treatment, follow up after birth, and how cases are recorded. The future of TAPS research needs better screening, better recording, and follow up that does not stop too soon. #20YearsOfTAPS
Twenty years into TAPS research, families may still hear that MCA Doppler is too unreliable or that screening only creates anxiety. After 20 years, those ideas should not still be deciding care. When screening is missed, TAPS cases are too. Source: www.mdpi.com/2077-0383/8/7/977 #20YearsOfTAPS
After a TAPS diagnosis, many families search online for answers. Some of what they find is outdated, inaccurate, or not in line with current guidelines. That should open a conversation with care teams, not shut one down. #20YearsOfTAPS
TAPS screening is still not consistent. Not all units use MCA Doppler routinely in monochorionic pregnancies, which means similar pregnancies can get different monitoring and different chances of earlier recognition depending on where a family is seen. #20YearsOfTAPS
TAPS is not a form of TTTS, but it is still often recorded that way. Families may hear TAPS in clinic, then find TTTS in notes or coding later on. That affects follow up, referrals, and research. #20YearsOfTAPS
Registries show what is happening. Trials help test what to do next. The TAPS Trial was designed to compare treatment approaches and follow outcomes after birth. But care still needs an individualized approach, with clear counseling and shared decision making. #20YearsOfTAPS
This ongoing TAPS hearing loss study is an example of patient led research. It began with parent questions that highlighted a gap in the evidence. www.tapssupport.com/parent-... #20YearsOfTAPS
Today we recognise women who have lived through complicated pregnancies, and the teams caring for them. Rights mean being heard. Justice means care without gender bias. Action means getting the next step right. We see what this asks of you, and we stand with you. #InternationalWomensDay
Laser changed TTTS treatment, but some pregnancies still developed TAPS after surgery. The Solomon trial showed that adding a line across the placenta lowered the risk of post laser TAPS. The TAPS registry then showed variation between centers in diagnosis, recording, and follow up. #20YearsOfTAPS
What we know about twin anemia polycythemia sequence (TAPS) comes from years of work across different centers. Each study added something, tested what came before, or showed that earlier ideas needed revising. Over time, that gave teams a clearer understanding of the condition
#20YearsOfTAPS
Sometimes TAPS includes loss. One or both twins may die in pregnancy, at birth, or in NICU. Parents can be grieving while care continues for the surviving twin. Clear words, time, and a written plan help. Notes should record a multiple birth and name the baby who died. #20YearsOfTAPS
In TAPS, early predictions can be wrong, and needs can appear later. Discharge from one service does not mean the work is done. Keep checking development through the school years, including coordination, speech and language, because new demands can reveal new needs. #20YearsOfTAPS
Follow up in TAPS cannot stop at NICU discharge. Tollenaar 2020 reported neurodevelopmental impairment in 30% of survivors, higher in donors. Hearing: bilateral deafness with auditory neuropathy, include AABR or BERA. Plan checks into school age, and write TAPS in discharge letters. #20YearsOfTAPS
TAPS does not end at delivery. Many twins start in NICU. Long term outcomes can include neurodevelopmental impairment and hearing problems, with higher risk for the anemic twin. Make sure TAPS is written in the notes, and leave with a follow up plan for both twins. #20YearsOfTAPS
In TAPS, treatment planning takes multiple conversations. Peer support can help after clinic, when the terms are new and questions show up later. These groups include bereaved families, people who know grief in pregnancy. Peer support is not medical care, it is lived experience. #20YearsOfTAPS
TAPS stories differ. Sharing them has built community for 20 years. Share your diagnosis story: what you heard first, and what you wish had been clearer. It helps other parents recognise their own experience, and helps clinicians hear what was said and what stayed unclear. #20YearsOfTAPS
TAPS treatment varies by pregnancy. Teams weigh stage, gestation, and how each twin is coping. Care may be monitoring with MCA PSV Dopplers, fetoscopic laser (Solomon), intrauterine transfusion, or delivery with NICU support. In rare cases, selective reduction is discussed. #20YearsOfTAPS
After a TAPS diagnosis, parents ask about treatment. It depends on severity, gestation, and how each baby is doing. Options: monitoring with delivery planning, fetoscopic laser, or intrauterine transfusion. Evidence is still growing, the TAPS Trial is testing what helps most and when. #20YearsOfTAPS
TAPS care varies by clinic. Guidelines recommend MCA PSV screening every 2 weeks for all monochorionic twins, yet screening, staging, and follow up still differ. The TAPS Registry (17 centers) documented this variation. Clear guidance gives a shared baseline. Next, treatment options. #20YearsOfTAPS