Redefining TAPS: How Stephanie and the TAPS Support Foundation Raise Awareness

When Stephanie Ernst-Milner first discovered that she was having twins, she was speechless. But what she learned over the course of her pregnancy, and in the seven years since, has empowered her to raise her voice. Initially, Stephanie’s twins were diagnosed with twin-to-twin transfusion syndrome (TTTS). However, her twins later started to develop twin anemia polycythemia sequence (TAPS), a condition which wasn’t even named until 2006, just 15 years ago.

Stephanie’s unique experience ultimately led her to raise awareness about the complexities of TAPS through the TAPS Support Foundation (Stichting TAPS Support), designed to support research efforts. Recently, I sat down with Stephanie to discuss TAPS myths and misinformation; the Foundation’s research project; and advice for parents who recently received a TAPS diagnosis.

Twin Anemia Polycythemia Sequence (TAPS)

Twin anemia polycythemia sequence (TAPS) is a rare disease affecting monochorionic twins. As Stephanie explained, monochorionic twins means:

Twins that share a placenta. In rare cases, TAPS can occur in other twins, but monochorionic twins are really where the cases are found.

Usually, during pregnancy, the blood flow between monochorionic twins is balanced. However, in TAPS, tiny connections (less than 1mm thick) allow unbalanced blood flow between twins. One twin (the donor) becomes anemic. Alternately, the other twin (the recipient) becomes polycythemic, where abnormally high red blood cells cause the blood to thicken drastically.

TAPS can be spontaneous (occurring in around 3-5% of monochorionic twins) or post-laser, which occurs following laser surgery for TTTS. Unfortunately, with post-laser TAPS, 26% of donor twins pass before or quickly following birth.

Before birth, TAPS markers include an enlarged heart and bright placental appearance for the donor twin, and a starry sky liver (bright spots on the liver) for the recipient twin. At birth, the donor twin will be pale and anemic, while the recipient twin is colored more deeply red or purple.

Stephanie's babies
Stephanie’s babies

TAPS vs. TTTS

In some cases, TAPS is misdiagnosed or mistaken for TTTS. However, Stephanie made it clear:

TAPS is not a form of twin to twin transfusion syndrome. They are different diseases, different pathogenesis, different diagnostic criteria, different outcomes. They have different ways of doing things.

Unlike cases of TTTS, TAPS shows no physical warning signs. Additionally, the mother carrying the child shows no symptoms. Thus, it is extremely crucial to advocate for increased TAPS awareness, better diagnostic and screening processes, and continued monitoring in monochorionic pregnancies.

TAPS Treatments

Although treatment options do exist, there is no current “best” treatment available. Treatments include:

  • Laser surgery using the Solomon technique
  • Blood transfusions
  • Expectant management (“watch and wait”)
  • Premature delivery
  • Pregnancy reduction or termination

Learn more about TAPS treatments.

Stephanie’s Story

Originally from Australia, Stephanie now lives in the Netherlands with her husband Marius. In 2013, the pair found out that Stephanie was pregnant with twins. They were excited, but nerves began kicking in when the doctor suggested that Stephanie’s pregnancy could be high risk.

Stephanie of the TAPS Support Foundation

Every two weeks, Stephanie needed to check in with her doctor to monitor for conditions like TTTS. However, her pregnancy progressed fairly normally until she reached 24 weeks. As she approached that appointment, she had begun experiencing some abnormal symptoms: skin tightness on her stomach, a painful backache. She considered that something might potentially be wrong – and unfortunately, she was correct.

During her 24-week appointment, her doctors noticed a significant fluid imbalance between twins. Further, the twins’ brain dopplers began moving apart, and her donor twin seemed anemic. Initially, Stephanie received a diagnosis of stage 1 TTTS. As Stephanie explained:

My team explained that TTTS is serious enough, but that they were also watching for this other condition…TAPS. But nobody could really explain it to me and there wasn’t a lot of information on it. I just remember thinking – great, I get the rare disease.

Now, twice a week, Stephanie and Marius returned to the hospital to monitor whether the TTTS or TAPS had progressed. Ultimately, the TTTS stabilized, with fluid levels returning to normal ranges. However, the TAPS did not, with dopplers worsening.

In the end, Stephanie’s twins, Emilie and Mathilde, were delivered at 31 weeks via an emergency C-section. They had stage 3 TAPS.

Receiving a Diagnosis

When discussing what it felt like to first receive the TAPS diagnosis, Stephanie said:

Sometimes, with these situations, you walk into an appointment, get this difficult diagnosis, and only retain the worst case scenario. One thing that I took out of my first appointment was, ‘My babies are going to die.’ It took three years to get that out of my head.

After her diagnosis, and after her twins’ birth, Stephanie discovered that it was difficult to really get any information. She explained:

What happened seven years ago, when this was going on, is that nobody could really tell me anything about TAPS. There were a few difficult-to-read medical journals and a website in Dutch, but I didn’t really speak much Dutch at the time.

Writing about TAPS

Ultimately, the lack of resources spurred Stephanie to begin writing about her experience online. Some of her stories were funny and embellished; for example, she wrote about how a doctor presented her with her placenta under a covered tray and:

All that was going through my mind was…I really thought this was my dinner.

In other writings, she covered TAPS-related research and insights. As she progressed and learned, she even formed relationships with some researchers, such as Dr. Enrico Lopriore – who actually named TAPS. Since then, Dr. Lopriore even became a patron of the TAPS Support Foundation when it began.

But Stephanie really knew that she wanted to make a difference when she began joining twin groups and noticed a lot of misinformation:

At this point, I had really become passionate about telling my story, writing, and wanting to get more information out there. Since I was part of long-term studies, I was getting information and knew I needed to make some changes in how TAPS was seen. I started a website and a Facebook group and they took off.

When I asked why she thought her website and Facebook group were so popular, Stephanie said that:

People started coming because there was information in their language at a human level, not a medical level.

Fighting Myths

After launching her website and Facebook group, Stephanie has continued to raise awareness – and fight myths – around TAPS. She told me:

This is my passion – raising awareness and trying to humanize TAPS. I also want people to see that the researchers behind this care and truly want to find answers. With only 15 years of research, I hope people feel like if they don’t know everything, they at least know everything that is out there.

When asked about TAPS myths and misinformation, Stephanie once again stressed that TAPS is not a form of TTTS. She noted that considering the two as the same entity can be dangerous for monochorionic pregnancies, as the screening process is not the same. Thus, TAPS can be misdiagnosed and is, perceptibly, underdiagnosed. Ultimately, this can cause a family to lose their twins if they are unable to diagnose or catch TAPS in time. Stephanie explained:

If you walk into an appointment and ask if you’re being screened for TTTS and not specifically for TAPS, but you believe TAPS is a form of TTTS, doctors are not going to be looking for TAPS. That’s why we need to break down that myth.

Screening Guidelines

Additionally, she told me that there is a lack of standardized screening guidelines. In the Netherlands, doctors begin screening for TAPS at around 14 weeks old. In Australia, TAPS screening begins at 20 weeks. However, in the United States, screening for TAPS is not supported. In fact, according to Stephanie’s article “Dispelling Myths about Antenatal TAPS: A Call for Action for Routine MCA-PSV Doppler Screening in the United States,” published in the Journal of Clinical Medicine:

The current and only national clinical guideline from the highly-influential Society for Maternal-Fetal Medicine states that, ‘There is no evidence that monitoring for TAPS…including >26 weeks improves outcomes, so that this additional screening cannot be recommended at this time.’

Ultimately, screening can save lives, so it is worth speaking up about implementing this valuable diagnostic tool on a wider scale.

The TAPS Support Foundation

TAPS Support Foundation
TAPS Support Foundation

For three years, Stephanie ran TAPS Support. Just one year ago, the TAPS Support Foundation became a registered charity whose purpose is to raise funds for TAPS research and related diseases. Currently, the TAPS Support Foundation is raising money for a project exploring the long-term impact of donor twins’ hypoxia and hypoglycemia at birth. Stephanie said:

Many people have their twins and think, ‘They’re out now, so there’s nothing to be worried about.’ But there is. Spontaneous TAPS has devastating long-term effects. For example, one in eight donors is born deaf, a symptom not recorded in anemic TTTS donors or fetal alloimmunization. Donors also have a higher rate of cognitive delays, autism, ADHD, and behavioral problems.

Within this current project, the research centers around these long-term effects. Why are donor twins born hypoxic and hypoglycemic? Is this the root cause of the deafness or the neurodevelopmental impairment?

Some of the TAPS Support Foundation’s smaller projects include:

  • Petitioning for TAPS to get its own ORPHAcode. To do this, Stephanie is working with various research teams to try and raise awareness.
  • Beginning a webinar series. In the TAPS Support Foundation’s burgeoning webinar series, patients will be allowed to speak to doctors and ask them questions (so long as these questions are not specific to their diagnosis).
  • Forming TAPS FAQs. The Foundation collects patient questions to develop FAQs. For example, in a recent discussion on laser surgery, a patient could not find anything online about the process or what to expect. The Foundation worked with the developer of the Solomon Technique and produced a five minute video discussing the importance of laser surgery and what happens during the surgery. Ultimately, the Foundation wants to understand what people want to know and how they can best develop this information.

Stephanie’s Final Words

Currently, Emilie and Mathilde are both seven years old. Stephanie described the girls as:

Active, healthy, smart, clever little girls

but also admits that they have experienced some challenges, related both to their prematurity and to TAPS. Stephanie said:

We’ve hit some challenges with speech delays and finally, with a lot of fighting, got a diagnosis of autism in both girls, as well as a developmental coordination disorder. It affects their fine motor skills more than anything.

However, her journey with her daughters has only further inspired her to make a change. Stephanie wants the medical community to stop being comfortable where we are; instead, it is time to build awareness and update our thinking. She recalled a quote by Professor Kypros Nicolaides:

There is no diagnosis of twins. There are only monochrionic or dichrionic twins.

For families expecting twins, Stephanie explained that this quote means that parents should be aware of the complications which face multiple pregnancies. She shared:

It isn’t about scaring yourself. It’s about being informed and feeling empowered so that you can make good choices. Know your support networks and where fetal support organizations are. Patients should have a voice; you need to understand what is going on, so don’t be afraid to go back and ask questions and discuss all of the options.

For example, she shared, outside of the TAPS Support Foundation, there are other organizations willing to help: the Twins Trust in the UK, Multiple Births Canada,  Australian Multiple Births Association, and the Fetal Health Foundation in the USA.

Finally, when asked if she had any final information to share, Stephanie paused for a moment. Then, with an air of comfort, she finished:

There is always someone who has walked a similar path to you…not the same path, since everything manifests in a different way. But a similar path. So no matter what happens, someone will have your back. And I hope I can offer that support.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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