Sophie Elizabeth had Trisomy 18 and she lived for 13 weeks.
Sophie’s mum Sharon explained the moment they realised something was not as it should be during her pregnancy.
The scan was all very hush, hush. You could pick up on the vibes that something was not right. The sonographer didn’t chat to us much, she just said that she would get the doctor to come and talk to us. He took us into another room and told us that he believed that it could be Trisomy 18 because of what he saw on scan. If it was Trisomy 18, he told us, she would either pass away in utero, while she was being born or shortly after birth. He said that Trisomy 18 is incompatible with life. They were very negative words, no hope there at all.
They had booked a date for me to go and have a termination, even though I hadn’t actually agreed to it. They explained what was involved and I said: “No, it’s not something I want to do”. I was 23 weeks pregnant by this time, I couldn’t do it. The consultant asked: “Are you telling me that this pregnancy is very precious to you?” and I said: “Yes, it’s very precious, she’s still my child, my baby, and I want to spend as much time with her as possible”.
I was told that most parents don’t want any interventions and my answer to that was: “Well, I’m not most parents.
As long as I can keep Sophie comfortable and out of pain, I’d like to spend as much time with her as I can”. My boys felt the same way, it was a family decision all the way through. My boys were sixteen and thirteen at the time and they were absolutely wonderful with her.
They said that they wouldn’t monitor her during the birth, that if she got into difficulties, it wouldn’t be nice for me to see that on any monitor. Again, I challenged it. I said: “I haven’t come this far to lose her. I want Sophie to be monitored and if she gets into difficulty, I’d like you to intervene because I would like her to be born alive. If there’s a chance that we can get to meet her alive then I want that chance”. And she was monitored.
You don’t have to take what you’re told at face value, you can challenge it and say ‘no, I’m really not happy about that’.
Sophie was born alive, she breathed spontaneously, and she was pink. It was just like my boys when they were born. She was 5lb 12oz born, which is a good size. She had dark blue eyes and she was a little fighter. Dark hair and button nose just like my elder son. She was pretty, very pretty.
I didn’t even have a bed for her to sleep in because they’d been so pessimistic. I didn’t think I’d be leaving the hospital with a live baby because they told me that I wouldn’t. They didn’t give me any hope. We had to stop in Mothercare on the way home and buy a basket for Sophie to sleep.
As Sophie was doing so well and gaining weight, we asked for Sophie's heart to be repaired. She was refused and we were told that children with T18 cannot tolerate anaesthetic. A fact we now know to be untrue.
We made the days count.
We did something different and special with her every day. We took her to see the cows and we picked a bluebell for her. She felt the sun on her face and we showed her the moon. She lived with us for three months at home. We took her out, like you would any other baby, visited family and friends, took lots of photos and just made every day special.
We had Sophie christened in our local church and had a lovely reception afterwards with all our family and friends.
It was the last three weeks of her life that her heart started to fail because she had two holes in her heart. It was a complete AV Septal Defect and when her heart started to fail, she spent a week in hospital, then she came home on oxygen. My son made a little trolley so we could pull the oxygen cylinder around with us.
By that time, they’d told us she had days and weeks left to live rather than weeks and months.
We hired a cottage, with the blessing of her consultant. She actually passed away when we were out walking by the side of the Brecon canal. I’d fed her and I could feel her breathing was getting shallow, and she took about three breaths and she was gone. She didn’t struggle, it was very peaceful. She wasn’t in hospital, she wasn’t covered in monitors and incubators or anything like that, we were actually in Brecon by the side of the canal. We’ve since planted a pink Hawthorn tree there and put a plaque where she passed away.
My elder son wasn’t with us, he was back in the cottage and we had to take Sophie back and tell Scott that she had gone. It’s one of the saddest things I’ve ever seen, to hand Sophie, who had passed, to Scott, and just watching him, holding his little sister. It’s one of the saddest things I’ll ever see. Then we packed the car up and we came home.
It was beautiful.
That’s not the right word to use but it was nothing like the doctors told me it would be. It was nothing like that.
She was the icing on top of the cake. The cherry on top of the cake I should say. Our family was complete when she was there, and now she’s not there, it’ll never be complete.
Read the other Stories in the ‘You’re not Alone’ Exhibition
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