The one with the symposium speech …

I wrote earlier about the amazing experience I was given to present at a symposium in October last year.  I’ve decided to post the speech I made (well, at least the paper version I used as a prompt).  Here it is, in all it’s glory (but masking the name of the doctors for privacy). 

Please feel free to ask questions in the comments section.  Oh, and here’s another gratuitous shot of me doing my ‘thang’.

Look! It's me! And a placenta!
Look! It’s me! And a placenta!

Many, many thanks go again to the team at the LUMC who are researching this condition and making amazing discoveries every day about this condition.  Please click the link below to read the speech.

This speech was presented at the TAPS symposium at the LUMC on October 28th, 2014.  All information contained in this speech remains the property of myself, and may not be shared without my permission. Thank you.

It’s a daunting thing to be standing before you all today.  I feel a little out of place – in a room full of medical professionals and researchers (excluding my husband the engineer) , I am more equipped to be talking to you about your bank accounts and finances than TAPS.

Allow me to introduce myself. My name is Stephanie Ernst.  I am 36 years old, married to the long suffering Marius, mother to the amazing twins,  Emilie and Mathilde.  To date my biggest medical expertise was in managing my asthma, being allergic to random and strange things, and occasional clumsiness resulting in damage to assorted limbs.  Oh, and of course, being terminally Australian.  (But I hear that clears up over a few beers!).  This is my story about TAPS.

A year ago this week, we received news that changed our lives and threw us into more turmoil than we were already in.  This was the week that everything we had been hoping for for our twins became a battle for their lives.

My story starts in early June, 2013.  In 2012, we lost our first baby at 9 weeks in a miscarriage, so to say that this pregnancy was both welcomed and feared is not an understatement. At 7 weeks, we met our little parasite (at this stage, singular parasite – the other was tucked away behind their sibling in a bizarre game of uterine hide and seek) and found it had a heartbeat and everything looked fine.  I was then booked in for a 10 week dating scan.   The technician probed and prodded for a few minutes, whilst I am silently waiting for the worst possible news … this pregnancy was also non-viable.

“So, they told you you’re having a baby?” Horrified, I answered “Yes, that’s right.” “Ok, here it is.  And here is the other.” “Are you kidding me?”  By this time, Marius is laughing at me. “No, mevrouw, I’m not joking” “No way!” To be honest, anything after that point is a blur, although I do recall asking if I could have vodka. (I didn’t get it.). I was referred to the resident twin specialist in the hospital, and an appointment booked for the following week.  Our meeting was interesting, with him explaining the risks associated with having monochironic twins, including a brief chat about this thing called ‘Twin To Twin Transfusion Syndrome’ which happens in some pregnancies.  ‘But don’t worry!’ he said.  ‘It’s really rare.  You won’t get it.’  Yeah, right.

Other than horrendous morning sickness to 18 weeks, and being diagnosed with a shortened cervix at 20 weeks, everything progressed really normally.  They passed all their checks with flying colours. It was amusing to tell all our family and friends that yes, we were actually expecting 2 babies and it was amazing to make plans for their future.

At 24 weeks,  I went for a routine check-up.  On the ultrasound it was discovered there was a massive discrepancy with amniotic fluid.  Baby A had so little fluid she was ‘stuck’ to the wall of my uterus, and Baby B had too much fluid.  We were rushed to Leiden hospital immediately from Almere for a second opinion.  This is where we were given the heartbreaking diagnosis that our girls had chronic Twin to Twin Transfusion Syndrome stage 1.
I will be honest here when I say that our first appointment is not the fondest memory of LUMC that we have.   We’d rushed from Almere to Leiden, had multiple echoes and were now having our worst fears confirmed.  .   We were given the choice to terminate the pregnancy, to participate in a trial for laser treatment, or to just ‘wait and see’.  We chose the wait and see option, based on the information at hand. The doctor raised the topic of the laser surgery trial, and we said we would discuss it.  The doctor pressured us again, and this time after we stated that we would consider it if things got worse, we were told we should probably make funeral plans for our babies.  We had been given a diagnosis that gave our little ones a death sentence.  We were heartbroken to have come this far and be told that things were going to get worse.

To be honest, the next few days blurred into weeks.  Our whole lives revolved around the hospital.  I was there every 3-4 days for echoes, with that thought that something could go incredibly wrong.  Thankfully, it seemed everything was ‘stable’.  I had conversations with a few different doctors and it seemed I was always given different information – sometimes conflicting. It wasn’t really until I talked to one doctor who took the time to explain about TTTS, and then also about this other strange thing – TAPS, which may be developing because one twin was a little anaemic.   ‘But don’t worry.’ He said.  ‘That’s not really a big concern right now.  We’ll just monitor it.’

Miraculously, the fluid levels began to equalise.  Twin A grew a little slower than Twin B, but she was growing again.  Other than the fluid levels – and with only a slight indication of anaemia in Twin A, things were progressing well.

I had it in my head that we only had to make it to 28 weeks.  For some reason, this was the magical milestone.  At 27 weeks, we were actually given clearance to go back to Almere hospital for alternating visits.  Things were starting to get better and we really truly started to relax.  We finished the baby room, and started to look forward to Christmas.  It never really left our minds that at any stage this could all go downhill, but for the moment, things were good.  Every appointment showed the same thing … ‘no change’. They were also watching the anaemia, which whilst it was there, really didn’t change that much.

Then it came to the 10th of December.  I had my routine weekly appointment that day, this time at LUMC.  For some reason, I knew this day was going to be a bit different when I had a completely different echo technician to the norm.

I’d gotten on the table as normal, and watched what was going on.  It was taking much longer than normal – and when he left the room to consult with a colleague, I guessed something was wrong.   . Being a veteran (at this stage, of around 21) echoes, I could already see that something wasn’t quite right with the readings. I knew that the anaemia had worsened. However, the technician was rather vague in his comments to me, and it wasn’t until his colleague explained that the blood discrepancy between the 2 had worsened, and to top it all off, they believed they had seen a shadow on the brain of the recipient twin.  It was time to make some serious decisions.  I was told we could deliver, or terminate.  (I really, really hope that the termination reference was one of those ‘lost in translation’ things.)

By now everything was a rush.  I was admitted to the LUMC, given my first wonderful steroid injection at 2pm, and hooked up to have a couple of CGT’s.  I called Marius, who then in turn called both our parents.  He stopped at home and picked up my hospital bag (which I hadn’t completed packing, to my horror I forgot all extra pairs of underpants and a hairbrush!) my laptop and my phone charger.

We knew on the 12th of December that sometime before 2pm we’d have the C-section.  It still didn’t prepare us for how fast it all happened.  At 11am, my room filled with people, preparing us for theatre. At this point I had possibly the first encounter with Dr ******* – not in person, but I do recall one of the doctors mentioning as they did an echo to find the position of the placenta that they had to find it, because if anything happened to it, he’d kill them.  I was then sent down to delivery.

12.31pm – Emilie is delivered.  Didn’t hear a sound, and she was whisked away. 12.33pm – Mathilde is delivered. Screams like  a banshee. We had no idea what was going on. Next thing, a nurse came back with Emilie … and I was introduced to my oldest daughter.  To be honest, when I first saw her, I cried.  A lot of emotions went through me. It was a fleeting visit, and she was whisked away again whilst I was sewn back together and Marius went with the girls to the ICU. I get stitched up, and taken to recovery.  It was a couple of hours before I actually got to see the girls – Emilie, still tiny, skinny and white – and my first look at Mathilde, bloated and red, and both incredibly ugly.

My second encounter with Dr ******* is slightly more humorous after the fact.  I remember being in my hospital room, and smelling the food coming around.  I’d had nothing to eat since the night before, so as you can imagine, with the stress of the day and the lack of food, I was starving.  A man in hospital uniform walks into my room, carrying a covered tray, and automatically I assumed it was my dinner.  As the table is pulled out, and the cover is lifted, I am greeted with … the placenta.  It was dyed pretty colours – red and blue for Emilie, green and orange for Mathilde – but all my poor brain can process is ‘I thought this was my dinner!’.   Dr ******* was extremely enthusiastic and it was very interesting – but still – I don’t think I was quite prepared for that shock.

He then asked if he could take it and do some further study on it.  ‘It’s yours, really.’ I said.  ‘No, you need to sign a paper.’ He said.   ‘Do you have a pen?’.  Anything really to get this off my table!  I signed over my rights to the amazing technicolour placenta, and I could actually swear that once this was done, he raced out of the room with his ‘precioussssss’.  Needless to say, the poor guy who delivered my dinner shortly after that probably thought it was a bit unusual that I asked if this really was dinner time …

The girls spent a grand total of 12 days in the LUMC NICU.  On Christmas Eve, they were transferred to the Flevoziekenhuis in Almere.  Emilie is a veteran of 3 blood transfusions before she was a month old, Mathilde has had 2 blood extractions.  Mathilde came home from hospital on January 16th, weighing 2.3 kilograms, Emilie a week later on the 24th weighing 1.9 kilograms. 10 and a half months later, we are now planning for a first birthday, and our first real Christmas as a family.

This TAPS journey has been interesting, to say the least.  When you tell people that your children were born 9 weeks premature with a condition found in only 5% of identical twin pregnancies, and they see 2 babies looking happy and healthy in front of them, sometimes you see disbelief in their eyes.  Sometimes it’s hard to tell people exactly what they were born with because there is no information out there – not even with ‘Doctor Google’.  When you explain that there was a problem with the placenta, and Emilie was generously giving all her blood to Mathilde, it’s a little clearer.  Well, kind of.  There isn’t a lot of information out there about TAPS, and whilst we now know that the Wikipedia page is a reliable source, it isn’t in ‘ordinary person’ terms.  It would be great if some extra information was released to patients about it, explaining what it is, and what is known.  Perhaps even in the future, a support network of patients, former patients and medical staff could also be created – to help before, during and after diagnosis.  It would be fantastic to have people able to relate together on their experiences, and to be able to help each other out.  Talking to someone who has been in the same situation can help no end.

Finally, I would like to extend enormous gratitude to the staff of LUMC, in particular those who had anything to do with our case before, during and after the delivery.  Thank you to ***** for the opportunity to share our story today, and finally to Dr ******* for explaining TAPS to us at a time when we had no idea what it was, and for continuing to keep in touch with us.  Thank you.