The story of Robin our T18 baby

In January 2023 we welcomed in the new year, still trying for a much longed for baby. Both of us were 34 and knew the older Emma got the harder it would become. After months of tests and waiting, the doctors couldn’t understand why we couldn’t fall pregnant.

The next step was IVF, and quick, as the cut off for Emma’s age was November 2023. To our surprise, Emma’s period was late and she had a positive pregnancy test. A quick check from Alan to make sure that 2-3 meant weeks not babies and the excitement and happiness kicked in! We were overjoyed.

Sadly Alan’s Grandma passed away soon after we had our good news. The funeral was a day filled with sadness but Alan wanted to share our good news to celebrate a new life coming into the Arnold family. Seeing sad tears turn to happy tears was wonderful and we knew we’d done the right thing. The circle of life was well and truly alive.

We had the 12 week scan on Monday 3rd July, and the normal screening blood tests were done, with results in 10 days, we both headed back to work with a smile on our faces.

On Friday 7th July, only 4 days later, our world changed very quickly. Emma received a phone call from the screening midwife team at the Royal Berkshire Hospital saying the results were back. They were showing a high reading of Edwards syndrome and Patau syndrome, something we’d never even heard of until that moment. We needed to go in and talk about the results and have another blood test. This would be more accurate and tell us if it was one of the syndromes or a problem with hormones and placenta. We were told the results would be back in 3 to 5 days but still wouldn’t be 100% accurate.

The telephone call came from the screening midwife team 3 days later where they had detected Edwards Syndrome, and we would need to talk about the next stage. We needed to attend the hospital on Friday 14th July where a foetal doctor gave us another scan. Where no defects were detected and advised us to wait till the baby was over 15 weeks so we could have an amniocentesis needle to give us a 100% result that our baby had Edwards Syndrome. These results came back very quickly and we received the news we were both dreading. The baby had Edwards syndrome.

Trisomy 18 (Edwards' syndrome) is a genetic condition caused by the presence of an extra chromosome in the body’s cells. This extra genetic material affects foetal development. 1 in 8 babies that survive birth live up to a year, these babies have significant learning and physical disabilities.

After these 4 long weeks of waiting for test results and appointments the saddest day arrived where we had decided to terminate our pregnancy. With the love and support around us from our friends and family we said goodbye to our baby Robin on Friday 1st September holding a private ceremony.

Throughout this period, we used the website of SOFT to help us make what we believe to have been the right decision for Robin and ourselves. It was always reassuring to know that if the need arose, we could have called and received counselling. Luckily for us we had a great group of family and friends to support us through the toughest period of our lives. This won’t be the case for everyone.

We know how tough this experience is and we want to raise money for SOFT so that anyone else that goes through this can receive the help that they need. So Alan, Dan, one of our closest friends and Adam, my brother in law are going to kayak 140 miles of the Thames from Lechlade to Teddington. We’ll be undertaking this adventure between Saturday 5yh July to Saturday 12th July 2025.

Following a second lose this charity has been a rock for us both and many other families.