‘Such a difficult experience knowing that after the labour and delivering the girls we would not have the joy of holding two healthy, crying babies in our arms’…
In March 2013 we were delighted when we found out we were expecting our first baby. So when we had our twelve week scan at the end of April and found out we were expecting Mono Chorionic Identical Twins it was double the excitement.
We were immediately placed under a consultant who would see us every two weeks for scans as there can be complications with identical twins, but with the constant support from everyone at St. Marys Maternity Hospital and additional scans, we knew we were in good hands and kept positive.
Sadly at seventeen and a half weeks we found out the twins had developed TTTS (Twin to Twin Transfusion Syndrome) – our worst fear. One twin was much smaller than the other, had no amniotic fluid and was shrink wrapped in the membrane – the other had lots of fluid. We were immediately sent to St. George’s Hospital, London. We arrived within three hours where we met with the leading consultant who confirmed the diagnosis.
Thanks to an early diagnosis, the twins were not in immediate danger and the risks to the twins would be lower when performing the surgery if we waited so we were asked to return in a week’s time for Laser Ablation surgery.
One long, anxious week later we returned to London for further scans, when we found out we were expecting little girls. The surgery would follow the next day. After a restless night’s sleep we arrived early in the morning for the ablation procedure, which was initially a success. All the blood vessels running between the twins had been severed with the laser. We even got a sneaky peak at the hands and feet of our baby girls through the scope used for the procedure which was amazing and beautiful. We were then taken to a ward for observation while we waited five hours for another scan to check all was well with the twins and confirm the surgery was a success.
We were sent home later that day a little exhausted but happy with the outcome. We were aware that the road ahead would be a long one as we were now at risk of delivering the girls very early – the next two weeks would be crucial. We were to have weekly scans at St. Mary’s Maternity Hospital, Poole until things looked to be ok.
For three weeks all seemed to be well and improving. The signs of TTTS were now almost gone as things balanced out and the girls were even almost the same size which is what we had been looking and hoping for. We allowed ourselves real hope for the first time in weeks.
At twenty-one and a half weeks during another scan it became apparent that something was wrong. We were briefed and sent back to London. We were again seen immediately and monitored for two days by two more of the three specialist Fetal Medicine Consultants to see if things would improve or change. They consulted with their colleague who performed the prior laser surgery, and also with colleagues in America. Everyone seemed to be baffled as to why this had happened after three weeks with such promising improvements. Following advice from these leading experts in the field it was decided we should try the laser ablation again. No one knew how it would turn out as these circumstances had never happened before. It was a case of risk the surgery again and hopefully save one or both of our babies or risk losing both girls by doing nothing. Surgery was complicated but we were incredibly comforted and well looked after with all three of the Fetal Medicine Consultants in theatre performing the ablation. More blood vessels running between the girls were discovered and severed as before. We then had the long, anxious, five hour wait for the scan.
Having had as many scans as we’d had and having had everything explained to us during them, we knew what we were looking for – two little heart beats. We looked at the screen hoping for the result that we could see we were not going to get. It was confirmed we had lost both our girls at twenty-two weeks – our world fell apart.
Everyone at St. George’s Hospital were wonderful, emotional and supportive as everyone had hoped for a different outcome. They were all wonderful when consoling us, but they then had to explain what needed to happen next. It was all so much to take in after all we had been through. We stayed in London for a few more hours to be monitored further and I was given some medication. During this time the staff at St. Georges made arrangements for us to go to the SPRING suite at St. Mary’s Maternity Hospital so we could deliver the girls and be near our home, family and friends.
After an horrendous drive and two nights at home with our grief we returned to St. Mary’s where I was induced. Such a difficult experience knowing that after the labour and delivering the girls we would not have the joy of holding two healthy, crying babies in our arms. The girls were born on 7th July 2013, Ivy Murray at 19:07 and Ava Murray at 19:15.
We have since found out that the girls had TTTS then, following the first laser ablation surgery developed TAPS (Twin Anaemia-Polycythemia Sequence), both of which are rare conditions. The leading experts in fetal medicine have been able to use our case to learn from and educate others in the fetal medicine community. Hopefully they will be able to help other families so they do not have to suffer the heartbreak that we have.
From the minute we stepped into the SPRING Suite at St. Mary’s Maternity Hospital, SPRING have been with us every step of the way.
It has been such a heart-breaking experience losing our beautiful twin girls Ivy and Ava to TTTS, but SPRING have enabled us to deal with a very difficult and personal situation in an incredibly supportive and caring way.
We have benefited from the SPRING suite many times; when we delivered the girls and for as long as we needed after. We were then able to use the suite again for as long as we wanted while spending precious time with them.
The SPRING suite is also where we met Julie, our lovely Bereavement Midwife. Julie has been great helping us with funeral arrangements; organising counselling provided by SPRING and so much more. SPRING have been there for us knowing what we need and want as well as helping us deal with our emotions through this terrible time. We feel encouraged and privileged that we will continue to receive this support for many months and even years to come.
We started a collection for SPRING as we wanted to give back a little something to help other parents in similar situations. And we plan to continue doing fundraising events in the future to support the charity and keep the memory of Ivy and Ava alive through their wonderful work. We’ve raised money so far through donations from our wonderful family, friends and work colleagues and some of our friends have even supported us and SPRING through various events of their own, for which we are hugely grateful.
The bake sale we held at work is just an example of how supportive everyone is. They know how much SPRING means to us and how important it is to be able to give something back. With one hundred staff in our department and over thirty cakes made by very generous people we were eating cake for three days! Over £400 was raised by equally generous people, perhaps even a little more generous in the waist as a result of eating all the cake too!
Thank you SPRING