Why International TAPS Day?

I could share my own personal TAPS story today, but I think instead it's more appropriate to talk instead about the need for an awareness day for a rare disease that no one really has ever heard of.

7 years ago, when we got our diagnosis, we had very little information about this disease. Noone was really sure of long-term outcomes, it was very much a "wait and see" thing.

We struggled to get recognition for Twin Anemia Polycythemia Sequence in our local care team, instead being labeled as TTTS patients and that "now that they're out, your worries are over".

Every delay, every issue was written off to routine prematurity-related issues. They're twins, they're premature, they'll grow out of it. We held onto this belief, but deep down, we knew that this wasn't the case.

Every day I thank my privilege that my case was delivered to the Leiden University Medical Center. But so many parents out there don't have that luck, and often face the challenges of a lack of information, a lack of training, and a lack of support.

This is why we need an awareness day for TAPS.

There is a strong misconception out there that TAPS is a form of TTTS. It's not. It never has been. It has been serially mislabeled, that part is true, and with a deep lack of understanding about the disease that is often spouted by experts and "thought-leaders" in the field. What they don't realize is that this dilutes the need to change screening protocols, introduce routine MCA-PSV readings into assessments for monochorionic twins, and raise awareness and train staff in recognizing the ultrasound markers for TAPS.

After birth, if monitoring hasn't been done, there needs to be blood testing and placental pathology done. There are vast differences between the treatments for Acute TTTS and TAPS - and the wrong treatments can be deadly.

In cases of spontaneous TAPS, donor twins, in particular, need specific hearing tests performed to establish if they're affected by deafness.

The perinatal mortality rate for TAPS donors is astronomical, with post-laser TAPS twins at an incredibly high chance of death.

Developmental delays and cognitive impairment run rife through our community at rates higher than TTTS patients.

TAPS is not a form of TTTS.

It is a separate disease, with different long-term outcomes, treatment options, diagnostic criteria, and pathogenesis.

The wrong terminology dilutes the urgency of updating screening. If patients walk into an appointment, with the idea that it's just a form of TTTS, they will ask if they are getting TTTS screening. It does not empower them to ask further and say "Will you screen me for TAPS?"

By saying TAPS is a form of TTTS, it also means that patients may not get critical follow-ups and intervention later. When visiting their pediatrician, they'll say "We had TTTS." With spontaneous TAPS donors at high risk of long-term cognitive delays, and deafness through ANSD, this means that delays in development and speech may just be written off to "routine prematurity related issues", instead of these families receiving vital long term followups.

We need to lose the phrase "TAPS is just a form of TTTS". It's damaging, it's detrimental, and it means critical testing, and intervention is dismissed.

Recognizing Research

My final comment here about the need for a day to recognize TAPS is this. 15 years of research into this rare disease means that we know so much more about it than ever. If I look at my journey with TAPS, the leap from 2013, to 2021 in terms of knowledge about treatments and outcomes is phenomenal.

The information from the TAPS registry helped open doors and create more data about this disease. The Solomon Trial gave us not only a way of decreasing the incidence of post-laser TAPS and TTTS complications but also gave us an innovative way to treat spontaneous TAPS. The current TAPS trial means that we are working on finding out the best way to treat TAPS in utero.

We now know that the short and long-term outcomes of both types of TAPS can be devastating.

The research teams worldwide are phenomenal, and help us, as parents, understand more about our own experience, so we can advocate for our children successfully. These amazing researchers, doctors, nurses, psychologists, clinicians - they all dedicate themselves with passion to helping us understand our disease. They genuinely want to help our twins - and so that's why it's so important to recognize International TAPS Day.

Without TAPS research, I would not have my girls.

#TAPSisreal. Today is March 3rd, the day that TAPS was given a name 15 years ago. It's time to recognize this rare disease, and celebrate the research into it. It's also time to break down myths and tired excuses, and create worldwide awareness.

It's time to update screening.

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Who am I?

I'm Stephanie Ernst, TAPS nerd and founder of the TAPS Support Foundation.

My passion for raising awareness for Twin Anemia Polycythemia Sequence comes from my own TAPS journey. My daughters were born at 31 weeks at the LUMC in Leiden, and my mission is to support research into TAPS, as well as connecting families diagnosed.

Everyone should have access to the latest information and research about TAPS so they can advocate for the best level of care. And most importantly, no-one should ever be alone in their TAPS journey.

Find our Facebook group here.