Stichting TAPS Support

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 Some of what they find is outdated, inaccurate, or not in line with current guidelines.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

Every TAPS story is different. Share your diagnosis story today: what you heard first, what you wish someone explained, and what questions you left with. Stories help other families feel less alone, and they tell clinicians what families needed in that first conversation. #20YearsOfTAPS

After birth, TAPS is confirmed with paired hemoglobin and reticulocytes from both babies, plus a placenta exam. Often used criteria: Hb gap ≥8 g/dL and retic ratio ≥1.7 (donor ÷ recipient). Maternal side may show a colour split, dye on the baby side can reveal tiny vessel links. #20YearsOfTAPS

Diagnosing TAPS in pregnancy looks different now. Since 2006, MCA PSV Doppler (MoM) can identify the pattern. Early staging used fixed cutoffs. Many teams now use delta MCA PSV (the difference), plus supportive ultrasound signs, to recognise cases earlier and plan care. #20YearsOfTAPS

Jan 2022: TAPS got its own Orphanet ORPHA code, 617294, separate from TTTS. Records then stay consistent across letters and registries. When it is filed as TTTS, families often have to re explain the diagnosis to access long term follow up, including hearing checks when needed. #20YearsOfTAPS

A birth photo of two babies, one red & one white, has been linked to TAPS for 12 years.They know their story & can explain it to classmates, but they have mixed feelings about being known through a medical image. Research has moved forward, but the lived reality is still complicated. #20YearsOfTAPS

In the 1950s and 60s, clinicians reported twins born one pale and one deeply red, and used the placenta to investigate why. They injected fluids to trace vessel connections, debated mechanisms, and stressed careful placental examination. The tools to spot it earlier came later. #20YearsOfTAPS

Looking back shows how far TAPS care has come. Research has defined the pattern of one pale anemic twin and one red polycythemic twin, and improved earlier detection. A 1617 painting hints at what we now recognize, but it is not proof. #20YearsOfTAPS