TTTS and TAPS birth story – And the loss of one twin

Twins TAPS

Author: Danielle Rollings

Note:  This TTTS and TAPS birth story contains the sad loss of a twin.

Finding out I was pregnant with our second set of twins

I found out I was pregnant in early November 2017.

We already had a 6yo boy and 2yo fraternal twin boys.  Each scan seemed to give us a new surprise. Firstly getting the news we would have another set of twins, this time identical. Secondly finding out that these twins would also be boys.

Our twins were diagnosed with TTTS at 22 weeks

My pregnancy was far from easy. I was attending regular appointments with my obstetrician and ultrasounds at the hospital, but unfortunately at 22 weeks we were diagnosed with Twin to Transfusion Syndrome (TTTS).

As we live in rural NSW, the closest hospital that specialised in TTTS, was the Mercy Hospital in Melbourne, a 3 hour drive from home. I was told I had to immediately stop working and would have to attend the Mercy for specialist ultrasounds weekly.

TTTS with twins

During our weekly scans, we were generally considered to only be stage 1… borderline stage 2 at worst. But then back into stage 1 the next week. As the weeks went on, the focus of the doctors seemed to be more on the size of Twin 1. He was on the 5th percentile. We were ready to be told we were going to deliver micro-prems. 27 weeks passed and we breathed a sigh of relief, as we had passed the gestation that laser surgery would be done. Any complications at this stage would mean a delivery.

Week by week we were told that our condition, while not great, was thankfully not getting any worse. We commenced twice weekly monitoring at both the Mercy Hospital and our local Hospital (Wodonga) at 28 weeks. At 33 weeks and 3 days, we were told we no longer had TTTS. It looked like our condition was more a case of Selective Intrauterine Grow Restriction (SIUGR) more than TTTS. We could also now stop attending the Mercy Hospital, as any issues, Wodonga Hospital and my obstetrician could handle us from there on.

TTTS and TAPS birth story

One of my scheduled monitoring appointments was on Saturday 26th of May. Everything was fine, and as usual I was sent home. On the morning on Monday 28th of May, at 34 weeks and 5 days, I realised that I hadn’t felt much movement from baby B overnight. I attended Wodonga hospital at 11am. A variety of scans, bloods, and dopplers were done. And at 4:06pm our Twin 1, James was born via emergency caesarian weighing 2136g, with Twin 2, Lucas, following at 4:08pm weighing 2930g. James was severely anemic and very pale and Lucas was born with polycythemia (an overload of red blood cells) and looking very red. He also had the cord wrapped around his neck twice. It took the team 4mins to resuscitate him.

TTTS and TAPS birth story       TAPS twins

Both babies had a few issues breathing, but we were told they were doing well and were moved into the special care nursery.

At just 1 hour old, Lucas had a seizure

At just 1 hour old, Lucas had a seizure and the decision was made for him to be flown out to a University hospital for specialist care. He arrived at the Royal Women’s Hospital at around 3am. There was no room for my husband on the plane, so he drove down, leaving Wodonga absolutely exhausted from the day at 1am. I followed 2 days later and James was lucky enough to be able to get a flight down to join us a week later.

After 7 days in NICU Lucas had an MRI

After 7 days in NICU Lucas had an MRI. The scan showed the news we least expected. It showed he had severe brain damage, which the doctors described as global and catastrophic. They also said the extent of damage meant he would be unlikely to be able to sustain his own life. He was taken off life support the next day.

TTTS twins

To everyones surprise, Lucas lived another 18 days. The Women’s Hospital gave us our own room on the NICU floor, where we could stay with Lucas and James, have lots of cuddles and enjoy our time with him as best as possible. His brothers and our family were able to visit and spend some time with our precious little boy also. Lucas passed away on 23rd of June 2018, cuddled by both mum and dad.

Twins TAPS

An official investigation into what went wrong

There has been an investigation into what went wrong during my pregnancy and why it wasn’t picked up. Although we are yet to get a formal diagnosis, we believe that the answer that we will most likely get is that we had developed a rare form of TTTS called Spontaneous Twin Anemia Polycythemia Sequence or TAPS. This explains both the size difference and the anemia and polycythemia. The extra red blood cells are known to cause bleeding on the brain and would have caused the brain damage.

James is now 14 weeks old and adored by his older brothers, but there is always going to be one family member we wish was here with us.

twinless twin

James holding Lucas’ ashes

Lucas Thomas Rollings 28/5/2018 – 23/06/2018


You can follow Danielle’s journey (Double the Twins) on Facebook HERE






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