Tommy's guest blog, 12/06/2019, by Helen & Will
In May 2017 Will and I found out that we were expecting Amelia. It had taken us 6 1/2 years and one early miscarriage to get to her and she was seen as good news in a time of sadness as we had lost Will's Dad very suddenly in April 2017. All was going well in the pregnancy until the 20 week scan. We were asked to go for a walk, which we didn't think was strange as people had warned us that we might be asked to if the baby was not in the right place.
When we came back the sonographer told us that he could see abnormalities and that we had an appointment with a specialist and to wait 1 hour 30 minutes. It was the longest 90 minutes that we have ever had.
When we saw the specialist she confirmed that our baby was unwell and although she had an idea of what it was she wanted to conduct an amniocentesis to send some fluid up to St Thomas' to be tested. We were given lots of information about the procedure but wanted to do everything that we could for our little one so the amniocentesis was carried out straight away.
Two days later we had a call from the hospital to say that the results were back, that our baby had Edwards Syndrome and that we needed to do some reading up about it before an appointment that had been made for us the next day. Edwards Syndrome is in the book you are given when you have the combined screening blood test at the start of the pregnancy but because we were told we had a 1 in 5400 chance of our baby having it we hadn't read about it. We did a lot of reading that night.
When we went back we were given another scan, shown what was wrong and told that it was not our fault and that Edwards Syndrome was not hereditary.
We wanted to know the gender of our baby and the hospital did everything to give us memories from recording her heartbeat to giving us another picture of the scan. We were then talked through what could happen next and were given the weekend to have a think about what we wanted to do.
Over the weekend we did some more reading and the chances of our daughter surviving the pregnancy was very low and we knew that we only had her for a short while. We decided to give her a name so that we could be calling her by it and decided on Amelia Rose.
We spent the weekend in Devon with my family, going for walks, talking about what was happening, calling Amelia by her name, playing music to her and reading bed time stories to her.
My waters broke whilst we were in hospital the following week and Amelia was born 21 and a half weeks into the pregnancy. When Amelia was born in September 2017, after a short labour, it was clear that she was unwell. She had rocker bottom feet, her hands were fused backwards, her heart was underdeveloped, her brain had not developed properly and she had spina bifida.
She was born alive and we had her for 45 minutes. To look at her face you would not know that she had been ill and to us she will be perfect forever.
We decided in January 2018 to try for our rainbow baby, thinking it would take a long time, and Kara was born at the end of October 2018. The pregnancy seemed long and we were always worried that something would go wrong. We had a NIPT test privately at the start of the pregnancy as we wanted to know the chances of things going wrong again. This time it was 1 in 10,0000. Kara is giving us lots of memories, however, it is sometimes hard to watch her as she is growing up as we know that Amelia did not have this opportunity.
We talk to Kara about her big sister all of the time. We have pictures of her up in the living room and a poem I wrote just after we lost her is on the wall as you enter our house. We celebrated what would have been Amelia's first birthday with a cake and card and we held the ornament that her ashes are in and sang happy birthday to her which is a tradition that we will continue as a family.
The Water Babies Splashathon will be Kara's first fundraising event and when we take part during our lesson we will be thinking about Amelia. We feel it is important that we take part as a family to help Tommy's to raise money to help them with their research. By raising as much as we can it will mean that other families receive support and information as early as possible if they ever find themselves in a similar situation to us.