We’re extending the LOSS-TAPS survey. Hearing loss is documented in some TAPS donors, including auditory neuropathy and sensorineural hearing loss. Please take the survey, or share it with your networks: www.tapssupport.com/parent-...
#TAPSTwins #HearingLoss
Today we launch a parent-led survey on hearing loss in monochorionic twins with Twin Anemia Polycythemia Sequence (TAPS). Open 12 Dec 2025 to 12 Feb 2026. Details for parents and professionals: www.tapssupport.com/parent-...
#TAPSTwins
New paper on TAPS after the loss of one twin reviewed 39 cases. Most surviving twins were born in the third trimester, early brain scans were clear, and deaths were rare. Read the study: obgyn.onlinelibrary.wiley.c...
#TAPSTwins #TAPSSupport
New paper on spontaneous TAPS measured ferritin within 48 hours after birth. In 10 twin pairs, donors had lower iron and recipients higher iron. The authors recommend checking iron at birth in all TAPS twins. Full paper: sbee.link/pauchwt7n4
#TAPSTwins #TAPSSupport
At Twins Congress 2025, Stephanie Ernst, Dr. Lauren Nicholas and Dr. Rebecca Fischbein call for updated antenatal TAPS criteria. Delta MCA-PSV over 0.5 with additional markers improves diagnosis, reduces missed cases and supports better care and research worldwide.
#TAPSTwins
We love a good podcast, especially when it's someone sharing their TAPS journey.
Thanks to Marni for sharing her story with Mamamia!
Click here to listen: sbee.link/aybuefgcqn
#TAPSSupport #TwinParent #TAPSTwins
Doppler ultrasound changed care for twins. MCA Doppler helps spot TAPS early in many specialist centres. Emilie and Mathilde saw a museum display in Salzburg on its history. And yes, they’re unintentionally colour coded. If you know, you know.
#TAPSTwins #MCADoppler
Reunions with our care teams are always amazing, and we wanted to share this one with you, especially as Poppy and Billie turn 2 today! Marni writes: We are grateful for Dr Glenn Gardener. He's not only an extremely skilled doctor, but also a genuinely warm and kind person.
❤️🤍
#TAPSTwins
Collaboration is central at TAPS Support. We’re proud of our connection with the LUMC fetal therapy team. Stephanie met Prof. Enrico Lopriore, a leader in TAPS who values families’ input. This is how research stays real.
#TAPSTwins #PatientsAsExperts
Some TAPS families are left with questions, missed signs, and outcomes that could have been avoided. There’s still no clear approach to screening, monitoring, or treatment. While some teams lead the way, we need global collaboration. Families deserve better.
#TAPSSupport #TwinLoss #TAPSTwins
1 in 8 spontaneous TAPS donors may develop Auditory Neuropathy Spectrum Disorder (ANSD). Early detection through NICU screenings is key. Long-term follow-up is critical for monitoring speech, cognitive, and motor challenges. More: sbee.link/d4gu9fkmxq
#TAPSTwins #NotJustTTTS
TAPS twins can climb mountains! Filip and Dumitru (R) were born at 29 weeks, diagnosed with spontaneous TAPS at 26 weeks, and treated with laser surgery. He has cerebral palsy and developmental delays due to a stroke in utero but continues to make progress. #TAPSTwins #TAPSDAY #ITD2025 #NotJustTTTS
Post-laser TAPS and spontaneous TAPS differ in long-term effects. Donor twins in spontaneous TAPS face higher risks of NDI and cognitive delays. Long-term follow-up is key for proper development. Learn more at www.tapssupport.com/the-lon... #TAPSTwins #TAPSDAY #ITD2025 #NotJustTTTS
Abby’s story: We couldn’t confirm, but our MFM later said the girls likely had TAPS. Diagnosed with sIUGR, inpatient at 26 weeks, delivered at 28+4. 92 days in NICU. Grateful for the community for helping me become an advocate. #TAPSTwins #InternationalTAPSDay #TAPSDAY #ITD2025 #NotJustTTTS
The best treatment for TAPS is still under investigation. The Leiden University Medical Center (The Netherlands) has launched the TAPS Trial, comparing laser treatment with standard care.
Learn more: en.thetapstrial.com/informa...
#NotJustTTTS #TAPS #TAPSTwins
Meet Dr. Femke Slaghekke, a maternal fetal medicine specialist at Leiden University Medical Center. In this video, Dr. Slaghekke explains the treatment options for TAPS twins. Watch here: sbee.link/nf7683ewqv
#NotJustTTTS #TAPS #TAPSTwins
Marni from the Gold Coast had in utero transfusions (IUT) after her twins were diagnosed with TAPS. Thanks to early detection and an incredible medical team, Poppy and Billie are now healthy little girls.
Watch her story: youtu.be/9-1zcvMRGv8?si=Yct...
#NotJustTTTS #TAPSTwins #TAPSDAY
How do you treat TAPS? Options include expectant management, the Solomon laser technique, IUT, early delivery, selective reduction, and post-birth treatment. Treatment should be tailored to each case. More: sbee.link/37h9yqrueb
#NotJustTTTS #TAPS #TAPSTwins
My twins were born at 34 weeks, but we didn’t know TAPS was the cause. Our recipient recovered quickly, but our donor needed transfusions, respiratory support, and was diagnosed with hearing loss. Read more: bit.ly/3F087tC
#TAPSDay #ITD2025 #TAPSTwins #NotJustTTTS
Thank you to Prof. Asma Khalil, Prof. Enrico Lopriore, and Assoc. Prof. Jena Miller for an insightful TAPS Day webinar. The recording will be available soon via GEFOG.
For Stephanie Ernst’s talk and resources: sbee.link/cg4jbwudna
#TAPSDay #ITD2025 #TAPSTwins #NotJustTTTS
Thank you to Prof. Asma Khalil, Prof. Enrico Lopriore, and Assoc. Prof. Jena Miller for an insightful TAPS Day webinar. Speaking on the role of patients in research was a privilege. We need more collaboration to drive progress.
tinyurl.com/tapsdaywebinar
#TAPSDay #ITD2025 #TAPSTwins #NotJustTTTS
Kicking off our awareness week with the team at Buzzi Children’s Hospital in Milan. Stefano Faiola, Daniela Casati, Arianna Laoreti, and Mariano Lanna explain why TAPS is not just TTTS.
Watch: youtu.be/0x39B1sgufM
#TAPSDay #ITD2025 #InternationalTAPSDay #TAPSTwins #NotJustTTTS
Time is running out to register for this free webinar kicking off the awareness week for International TAPS Day. Join leading experts as we explore the latest in TAPS research, care, and advocacy. Spots are limited. Register now: sbee.link/ptr634hjyv
#TAPSDay #ITD2025 #TAPSTwins #NotJustTTTS
Did you know? While this is a familiar image in the world of TAPS, they are also the daughters of our founder, Stephanie. Today this photo is 11 years old, and it is also the girls' 11th birthday. Forever grateful to LUMC Fetal Therapy. ❤️🤍 #TAPStwins
