This page has been created to allow people to make donations in memory of Arthur Douglas Nuttall. Arthur was born on 31st January 2016 and passed away shortly after birth. His surviving twin, James, was initially very poorly and in intensive care but is now home and doing very well. We have decided to share Arthur and James’ story to raise awareness of their rare condition and raise money for much needed research to improve the outcomes of Twin-to-Twin Transfusion Syndrome.

Twin to Twin Transfusion Syndrome (TTTS)
Twin-to-twin transfusion syndrome (TTTS) is rare but life threatening condition that occurs in about 10-15% of identical twins who share a placenta (monochorionic twins). It arises because there are blood vessels within and on the surface of the shared placenta connecting both twins. Usually, these vessels allow blood to flow evenly between the babies, however, in TTTS, part of the blood flow is diverted from one ‘donor’ twin to the other ‘recipient’ twin in what is effectively a blood transfusion (hence the name). A lack of blood supply can affect the donor twin’s growth so they are smaller than average. The recipient twin is usually larger and has a higher blood volume, which can strain their heart as it works harder to cope with the extra blood supply. To compensate for the excess blood, the recipient twin often produces a large amount of fluid. In contrast, the smaller donor twin can become stuck against the uterus wall with little surrounding fluid.

The different stages of TTTS:

Stage 1: The mildest form of TTTS with high levels of amniotic fluid around one baby and low levels around the other.
Stage 2: The donor now has no urine visible in its bladder.
Stage 3: Either the donor twin or recipient has abnormal blood flow patterns shown by the scans which assess the blood flow (Doppler scans)
Stage 4: This is characterised by the development of heart failure or fetal hydrops (abnormal swelling due to excessive accumulation of watery fluid) in the recipient.
Stage 5: This is when one or both babies have died.

Our story

Already aware that we were expecting twins, we found out at the 12 week scan that they were identical but also that something was wrong. We needed to be seen by a specialist team in London and were sent the next day to University College London Hospital (UCLH). We were given four possible diagnosis’, including TTTS. The boys were scanned weekly and at 14 weeks, TTTS was confirmed. The consultants explained that treatment (laser ablation therapy) would be needed however it was not recommended before 16 weeks due to the increased risk of miscarriage. Laser ablation therapy involves finding every blood vessel connecting the twins and closing them to prevent the flow of blood from one baby to the other and the possible risk of transfusion. The following week, the decision was made that this was needed immediately as the boys had reached stage 3 of TTTS and were progressing towards stage 4. With this treatment, we were given a 90% chance that James would survive and a 65% chance that both James and Arthur would survive.
Two hours later the consultant was inserting a camera and a laser into my tummy, piercing my womb and going into James’ amniotic sac. As we watched him burn off blood vessels in the placenta, we hoped that James wouldn’t wave his hand or foot in front of the laser when it fired as this would result in severe injury. 400ml of fluid was drained from James’ sac and I had an overnight stay in the hospital. The following day, an ultrasound scan revealed that the procedure had been successful – the dopplers were a little more stable and Arthur now had some fluid around him. All we could do now was wait and see how things progressed.
We were on an emotional rollercoaster as each week we were given the news that the dopplers were continuing to improve and the boys were still growing. We would travel home on the train feeling relieved and excited but know that a week later we would be returning, feeling anxious and fearful. Six weeks after the surgery (Christmas Eve 2015) we were discharged from UCLH back to our local hospital as whilst Arthur was still very small, both boys were growing and their dopplers were stable. We finally allowed ourselves to look forward to and plan for having two babies and did so over the Christmas period.
We were heartbroken when we were told at our next scan two weeks later that again, something was wrong. Arthur appeared to have stopped growing, had fluid around his organs and his dopplers were all over the place. We went back to UCLH the next day and were given the devastating news that we had been dreading. We always knew that Arthur was likely to stop growing at some stage; we had just hoped that it would be much further along the pregnancy. Many consultants told us that day that Arthur was unlikely to survive in my tummy and even if he did, they estimated that he was only 330g so would not survive the outside world.
The following week (24 weeks into the pregnancy), my membranes ruptured and James had no fluid left in his amniotic sac. I was given steroids in case I went into labour and was admitted to UCLH. The plan was to stay there until I reached 34 weeks but just over three weeks later, I started contracting. After a high dose of magnesium sulphate and 12 hours later, I was still contracting. The decision was made for an emergency caesarean section and James and Arthur were both born at 3.25pm as they came out cuddling each other. They both surprised the doctors with their weights; James 1,065g and Arthur 480g. Sadly, this just wasn’t big enough for Arthur and the doctors made the decision not to resuscitate him.

Arthur means “as strong as a bear” and he was our little fighter right to the end. We are so proud and grateful that we got to meet him and hold him in our arms as he took his final breaths. We cannot put into words the pain of losing our beautiful little boy and the dreams that will never come true for us. We hope that one day, with more funding and research into TTTS, other families will not have to experience this pain and the special bond between identical twins will never be taken away from them. We will always have a part of our family missing but are so thankful everyday that James is here and getting stronger, and in him; Arthur’s memory will always live on.