When the doctors confirmed I was pregnant with MCDA (monochorionic twins sharing one placenta) we really didn’t understand what that meant or why it was so ‘high risk’. For those unfamiliar with twins (like me before having them!) MCDA is the result of a single egg splitting into two natural clones. The exact cause of embryonic splitting remains elusive because monozygotic twins are ‘rare’ in the animal world, and even in the ‘twin world’. This means that there is little research to help aid pregnancies of this kind. When my case was confirmed, we were immediately referred to the Fetal Specialist Unit, under the care of Consultant Elly Tsoi at Whittington Hospital/UCL, where we began weekly scans to monitor the fetal growth and to watch for any complications.

We were not prepared to be told at 27 weeks that the babies had quickly developed acute Stage 4 Twin-to-Twin Transfusion Syndrome (TTTS). TTTS is unique to monochorionic pregnancies and occurs in approximately 10% of MCDA twins (themselves only 0.29% of pregnancies worldwide). It usually presents itself between 16 and 26 weeks and because it is so rare it had not been an immediate concern at our scans. There had been other possible complications throughout the pregnancy but my twins were (and continue to be) constantly unpredictable and, as Miss Tsoi admitted later, gave her ‘countless sleepless nights.’ 

Unfortunately, at my 27-week scan things looked very different than the week before. One of the twins was surrounded by a significantly larger volume of fluid, while the other looked like she was suffocating in a plastic bag. The doctors went on to say ‘the survival rate for diagnosed TTTS-twins is approximately 10 percent if we don’t intervene now’. And, even with intervention, the morbidity rate of any surviving twin was just over 50%.

I am a fact-based, positive-outlook type of person, but this was hard to digest. We quickly went to Google to try to learn more but there is so little available data in this area because there is little known as to why TTTS occurs. 

In our case, the imbalance was the result of the smaller twin pumping blood through the placenta to the other twin, causing the recipient twin to receive too much blood (causing pulmonary regurgitation) and producing extra urine. This also caused an enlarged bladder and too much amniotic fluid around the recipient twin. The donor twin, in turn, was producing too little urine, resulting in low amniotic fluid and this twin’s bladder wasn’t even visible on the ultrasound. Brain waves readings were also too high and too low, resulting in potential oxygen deprivation and cardiac arrest.

Professor Kypros Nicolaides, a pioneer in fetal medicine, had been closely watching my case through weekly updates by my fetal specialist team as my twins weren’t acting ‘normal’ throughout the scans. A quick decision was made that they were ‘too sick’ and wouldn’t survive if they came out then, but intervention was needed if we wanted to save at least one of them, and me. The further TTTS progresses, the higher the risk to both mother and babies.

The next day, we were at Kings Hospital undergoing fetoscopic, selective laser-ablation and amnioreduction. This incredible surgery uses a special laser to burn and disconnect the shared blood vessels in the placenta. It was a truly out-of-body experience holding Professor Nicolaides’ arm while his steady hands performed surgery, all the while watching his work and the babies swimming around on the screens in front of me. Burning the blood vessels stops the uneven blood flow between the babies with the goal of preventing further progression. Then we had to wait. The next 24 hours would reveal if one or both survived the surgery, and then we had to wait again to see if it had done anything to correct the imbalances.

I went back to work, with the incredible support from my employer, and at 34 weeks, the girls decided they would make their grand entrance. By some miraculous turn of events, we all survived a very complicated delivery. Maggie and Willow were born weighing 4lbs and 3lbs, respectively. Three weeks later Maggie came home from the NICU and Willow followed the week after. All of our doctors have called the girls ‘scientific miracles’, emerging as they did without a need for supplementary oxygen or any significant signs of damage from TTTS. We will continue to monitor their physical and mental development but nobody would ever guess today that our wild little toddlers had such an eventful start to life, especially if watching them take on their 4 year old brother!

As a family, we are so grateful for the research and access to care that we received in London. However, so much more needs to be done as the majority of TTTS cases do not end this way.

TTTS kills more babies a year than Sudden Infant Death Syndrome (SIDS). Read that again. And yet it doesn't receive nearly as much publicity or funding for research. This is why I am asking for your help.

Partnering with St George’s Hospital and other fetal medicine centres throughout the UK, Twins Trust has set up a UK-wide registry of all TTTS pregnancies, their treatment and their outcomes to understand the most effective treatments in the short and long term. I have been fortunate enough to partake in this research and it is helping build a more accurate picture of TTTS in the UK and the survival rates. This invaluable data will support future ongoing research into TTTS including the longer-term consequences of individual treatments. Eventually, my hope is that these treatments can be replicated internationally so that all families of twins, triplets or more receive the best possible care and support.

As a family we are running/walking 10K to raise money to continue the research that allowed my girls to have a chance at life and hope the money raised by us can support future families with a similar diagnosis.

Thank you,

Christina, Tim, Nate, Maggie & Willow