International TAPS Day 2024 – Your TAPS Story

Each year we highlight stories from the families in our community in our #FacesOfTAPS campaign – and share your TAPS Story. These are stories with different outcomes, and from different parts of the world. The stories are published with permission. Our community is the reason we exist – because we believe parents can teach many important things, and together we can make a difference. Welcome to International TAPS Day 2024.

Piotr’s TAPS Story – Poland

After 4 years of trying , 4 invitros, giving up and starting the adoption process (that’s very long and hard in Poland) nature decided to give us our twins. 🙂 Pregnancy was stressful. We met our first doctor when my wife had bleeding in 2 month.

Thankfully everything was ok, when doctor saw that it’s Monochorionic-Diamniotic pregnancy he told us to be ready for TTTS, make some contacts in clinics abroad etc. In 24 week he said something is wrong. We resigned from our appointment to fly to Nicolaides in UK. We ended up in UCZKiN hospital in Poland with TAPS recognized.

Thankfully the amazing doctors chooses waiting option and planed do do CC in 30 week. One of the boys had a problem with his heart (fixed itself later) and one with bigger cerebral horn (fixed too) In 29 week my wife ended in hospital, had big problem with Eclampsia and twins had bad result 2,7 for one, 0,29 for second. They were born in 29+4 at 15.00 and 15.01 – 4/10, 1650g and 5/10, 1230g

Placenta was in very bad state, disintegrating in hads so laser operation could be bad decision. Red one was intubated and nearly died second day, white one had blood transfusion first day. They where in hospital for 2 months with breath and eating problems. White one had 4 blood transfusions. After going home white one had eyes and hernia operations. We where two times in hospitals with lungs infections (in flue season). Now they are 1 year , healthy and perfect (well if they would be so nice to sleep at night 🙂!

Be strong parents and kids! Also if you are from Europe near Poland i highly recommend UCZKiN hospital.

This TAPS Story and image are used with permission from the parents.

UCKiN Instagram

Piotr story internatioanl taps day world awareness taps twins taps story

Shannon, Jax and Klay’s TAPS Story – United Kingdom

We first found out about TAPS when we were transferred from Wythenshawe to another FMU at St Marys.We had a really rough pregnancy and had issues with recipient having echogenic bowel and donor having SFGR which is why we were transferred in the 1st place. When we found out we were pregnant we were warned about TTTS and the risks of MCDA pregnancies. At 26 weeks we were told the babies had spontaneous taps Stage 2 (the first time we had ever heard of taps) and the course of action was to follow expectant management – we were made aware of all the risks from Hearing issues and Neurodevelopmental issues.

From then on we had weekly scans and with the help, I pushed for Twice weekly scans as I felt this wasn’t enough monitoring – which after a fight..they then agreed too. At week 28 we went for a scan and the difference had increased yet again after remaining stable for around a week. We were told to prepare as the babies needed to be delivered within 48hrs as we had run out of time and now it was getting really dangerous in which we would risk losing one or both twins.

Both Boys were born via CS on 21st Jan at 29+1 and came out crying. They weighed 2lb 8 and 3lb and were whisked off to NICU where donor (Jax) had x2 blood transfusions. They have been coping with NICU life well and are currently on Day 36 , both regulating there own temperatures , Recipient (Klay) is off oxygen fully and attempting to bottle feed and Donor (Jax) is also attempting to bottle feed and only requires a little bit of low flow.

jax and klay international taps day story world awareness taps twins taps story

We are only just at the start of our Journey and have been through so much already (too much to type) we have to fight all the time to make sure they’re getting the correct care and attention as majority of the doctors aren’t aware of what TAPS is or just constantly mention TTTS which is really frustrating – I’m sure the confusion won’t stop here but I just wish MCA dopplers were a standard practice for ALL HOSPITALS as it could’ve been caught alot sooner.

This TAPS Story and image are used with permission from the parents.

Shannon’s Instagram

Samantha Jo’s TAPS Story – USA

My boys were diagnosed with spontaneous TAPS at 17 weeks. I am a single mom so I was completely alone at the appointment when I found out. They told me I would have to have weekly appointments, as they were still in stage 1, but if anything were to change I’d have to increase my appointments and potentially see a specialist.

This was toward the end of July and by the beginning of August I was bumped up to twice weekly appointments and referred to the Midwest Fetal Care Clinic at Children’s in Minneapolis as they were borderline stage 2. My first appointment took almost a half a day and consisted of a detailed ultrasound, an ultrasound of the heart, a meeting with a pediatric cardiologist and a meeting with the specialist. Everything has gone ok until the meeting with the specialist. He explained in detail what TAPS was, how rare spontaneous TAPS was, the possibility that I could lose one or both babies and that they were at stage 2.

samantha jo international taps day story world awareness taps twins. taps story

The plan was to keep doing twice weekly ultrasounds – one at the MWFCC and one with my MFM doctor. I would do this until 28 weeks and if they moved past stage 2 they would do laser surgery. If I made it past 28 weeks and they moved past stage 2, they would just deliver. Each week was a waiting game, the boys would bounce back between stages and eventually I made it to 28 weeks without needing surgery.

I no longer had to be seen at the MWFCC but still had to be seen at the MFM office twice weekly, as on top of everything my body started going into premature labor. At 32 weeks I went in for an appointment and they were concerned the boys had moved back to stage 2.

I was supposed to come back in the next day, but my body naturally went into labor. Due to the concern of the boys being back at stage 2 they did not stop labor and had me deliver that day. August James and Theodore William were born at 32 weeks on September 23rd 2023. They were delivered via c-section and brought directly to the NICU.

You could easily tell Theo was the recipient, as he was so red he was almost purple. Gus, the donor, was very pale. The first few days there was concern they would both need blood transfusions but by the end of the week they were out of the clear and moved to the Special Care Nursery.

They spent almost a month in the hospital before finally coming home. So far I haven’t seen any lingering effects from the TAPS but I am not sure if it was too soon to tell. I wouldn’t have gotten through my pregnancy without this group and all of its resources. I hope they continue to make discoveries about spontaneous TAPS and can continue to put more information out there. It was hard to navigate with little information, but the support made it easier.

This TAPS Story and image are used with permission from the parents.

Samantha Jo’s Instagram

Samantha Jo’s TikTok

Marni’s TAPS Story – Australia

Marni’s Instagram

Marni’s TikTok

Claire, Florence, and Winnie’s TAPS Story – United Kingdom

We were incredibly lucky at The Rosie to have a fetal medicine team who were so on the ball at diagnosing TAPS and referring us to Professor Nicolaides. If they hadn’t been, there is no doubt we would have potentially lost both girls. I would urge anyone pregnant with twins sharing a placenta to make sure your scans are regular and include the correct dopplers to check for TAPS throughout your entire pregnancy as without them, it’s a silent disease.

Filip and Dumitru’s TAPS Story – United Kingdom

Following TAPS , our boys were brought in this world through C section at 29+5 . 4 days after we found out Dimi , the first born (900 grams ) had also suffered a stroke while in the womb.

Even though we were told that he won’t be able to lift from the bed , we did our best and despite being quadriplegic ( right side more affective) at almost 5 years old , he is able to crawl using hands and knees. Recently he started crawling a few steps like a bear using his feel to step on the ground.

As for his brother , Filip , who develops like all the children at his age , we would like doctors to know that he has some coordination issues. They might want to look into this if it occurs to other twins that didn’t go through all the hardship like Dimi did . Thank you !

Anna, Leo and Seb’s TAPS Story

We were referred to Medway Hopital at 21 weeks for additional check ups with their fetal medicine team as our local hospital (Maidstone) didn’t do the MCDA doplers. All of our scans had been great to this point and babies were showing to be exactly the same size but at this scan, they spotted the potential for TTTS and asked us to go back 2 weeks later for a check up. By this point it had turned into full blown stage 3 TAPS and TTTS and we were sent straight he to Harris Birthright Centre the next morning for laser surgery. We went back the following week for the checkup where it was shown that it hadn’t worked so they had to complete the laser for a second time and was this time done by Professor Nikolaides (what an amazing man!).

Another week went passed (now at 25 weeks) and back we went for checks. This time it had worked and we were so relieved ! But due to a previous LLETZ procedure and all the pressure from the additional fluid, I was referred back Medway for bedrest as my cervix was at 6mm. The aim was to get us to 28 week and we did! But when we reached this date it was apparent I just needed to stay in until they came. The recipient was showing brightness on the brain and some tricuspid regurgitation on his heart. It also looked like the TAPS was returning so the doctor made a decision that we wouldn’t go any further then 32 weeks.

At 30 + 3 I was sent via ambulance to St Thomas’ for MRI scans to check on the boys following the laser. I think that having been laying down for 5 weeks and the bumpy ambulance ride, this must of pushed my cervix over the edge as my waters went that night and I was sent for an emergency c-section.

The boys arrived safely on 8th December weighing 3lb 2oz and 3lb 3oz. This is where the confusion begun! I’m sure they got confused with which baby came out first as I just heard the doctor say “both babies out” and they are down as exactly the same time on their paperwork. Their weights were so similar so I thought the donor had caught up with the recipient but my placenta was examined afterwards and it showed they it had flipped the other way and the donor would of been receiving 75% of the ‘food’ so it could have been that the donor had become the recipient and vice versa but this amazingly had worked in our favour.

Still unsure of who was who, I thought we might be able to tell by who had the TR but both had now had a mild form of this! So we will never know and they will forever be our miracle babies.

We spent 8 weeks in NICU as we were stuck on oxygen for some time (it was actually discussed that we would be going home on oxygen but they both came off a couple of days before we left) before coming home on 31st January and they are doing really well. Leo has a small regurgitation on his heart still which we will check at 6 months but all other issues have now cleared up.

Thinking of everyone going through this at the moment. I hope our story will give you some positive thoughts to get through it. I think the hardest part of all of it for me was the wait in between the lasers. I became really fixated on if I was feeling any movement but I had an anteria placenta so I wasn’t really feeling that much anyway 🤣.

Alice, Ed, Ava and Phoebe’s TAPS Story

There was much confusion at the start of the pregnancy as to what type of twins we had. The whole placenta was never able to be seen on a scan and it looked like it was in two separate parts however it was decided that it was most likely MCDA and so we were thankfully put on that pathway and had scheduled appointments every two weeks. We were given information about the risks of MCDA pregnancies and I read up on TTTS but just skimmed over the TAPS information as I thought it looked so rare I didn’t think it would happen to us. The girls’ MCA dopplers were first measured at week 20 and it was picked up that there was possible TAPS. By week 22 it was diagnosed. It was incredibly stressful and confusing as initially they thought the anemic and polycythemic twin were swapping/oscillating. On reflection it seems more likely that a mistake was made in recording their dopplers leading to a few weeks of confusion. It was in this time that I found the details for Professor Asma Khalil a leading TAPS expert in the UK. Even though I was not her patient she kept in regular contact and was an amazing support and reassurance to us.

We were referred to Bristol and continued seeing our local doctor and two doctors in Bristol until the end. Because of the issues about visibility of the placenta and no clear sight of connections, our only option was to opt for the wait and see approach. We were on high alert every week from week 24 for delivery. Every week felt like a win but it was incredibly draining and worrying.

We had other complications. Ventriculomegaly was discovered in our twin a, and we had to have an MRI scan. At week 28 we were diagnosed with SFGR due to the size difference between the twins. At week 31 it was decided that it was not worth pushing it any further along, given the flow in the umbilical artery was beginning to become absent. TAPS was still present however it was becoming difficult to measure the dopplers due to the position of twin B.

We had a c section the following week at 32 weeks. The neonatal doctors were mostly great however admitted they hadn’t heard of TAPS and had to google it. Our neonatal journey was long. Our recipient was the most poorly at birth with a haemoglobin level of 277. She was on a ventilator. Our donor was very resilient at birth however declined over the coming weeks and we spent a total of 9 weeks in the neonatal unit. She kept dramatically desaturating and we ended up coming home with oxygen for a month.

We still don’t know why or how TAPS occurred. The histology report on my placenta could not identify any connections between the two placental masses, however it did finally confirm they were MCDA twins. It’s something I have to accept we will never know the answer to.

The girls are beautiful, noisy, busy, full of life and have very strong individual personalities. I am constantly shocked that we made it this far and that we have two healthy little girls.

The TAPS support group was a great source of comfort to me and my partner during the hardest time in our lives. Reading others stories made us feel much less alone. Time will tell whether there will be any lasting impact from TAPS however for now we are enjoying this special time and feeling very grateful for our girls.

Pin It on Pinterest

Share This