Tiffany’s Story

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When I found out I was pregnant I was over the moon and little did I think there could be so many problems to follow. I went for my 12 week scan which indicated problems as the neck measurement was bigger than it should be. I then had to have blood tests done. They told me my baby was at high risk of Trisomy 21, I didn’t want to believe this so I had an amniocentesis which then confirmed the condition. He had heart problems which more than likely would lead to more problems when he was here. We decided we would have to terminate the pregnancy at 15w and 5days. I was put on a ward and told to have my baby in a bed pan, when he arrived I just screamed. He was then placed in a little box with a little hat and little blanket and all I got to remember my precious baby was his hand and foot prints and was sent home just me and my husband. It broke my heart into pieces and I really struggled mentally but I couldn’t give up on what I wanted. We tried again and had a miscarriage at 7w and 6days I felt like it was my punishment. But I still couldn’t give up so we tried again, I was so worried.

We had our scan at 8 weeks then paid for bloods doing at 11 weeks, 2.5 weeks later they came back inconclusive. We had our 12 week scan and the neck measurement wasn’t right just like before, it was bigger than it should be. So the panic kicked in. We made the decisions to have my second amniocentesis which hurt in so many ways, not just physically but mentally. Then the hospital finally told me everything was looking fine and that we were having a little girl. We were thrilled, we told people, and we finally started buying things. Two weeks later the hospital then phoned me to tell me there was something wrong. They kept saying sorry and I just fell to the floor and screamed and cried. They then had to leave me for 4 days so they could research it because they didn’t know anything about the condition. I got told my baby had Tetrasomy 18p then I got given a 26 page leaflet of bad news. I begged them to find me a positive and they wasn’t one. They told me her chance of survival was small and then she would have a life full of very complex needs. When they researched it they said they have never seen someone with so much of the chromosome missing but then extra bits that were upside down. All they could do was tell me everything and I was then left with this decision to make again. How could I carry on a pregnancy knowing the chance of survival was so small and knowing she’s going to be in and out of her hospital all her life and who would look after her when I’m too old or when I pass away. So we made the most difficult decisions to terminate the pregnancy at 16 weeks and 6 days.

I was then in a very bad place, I didn’t know how to cope. I needed help and I couldn’t find it. I cried morning, night and to everyone that spoke to me, I just couldn’t hide the pain any more. The pain of losing one baby hurt more than I ever thought imaginable but losing three I can’t even put into words. I tried to find help anywhere I could so I went online and read about TMFR pregnancies which I had never heard of. This is a pregnancy when families have lost children due to health problems and having to make the most awful difficult decisions. I then realised it’s not just me, everything I was feeling is normal. I just felt like everyone was judging me but why couldn’t they understand how I so desperately wanted these babies. I felt alone, people avoided me which hurt even more, and I needed my friends and family. I needed distractions not to be left in my own head. I couldn’t be near pregnant people or new babies because it hurt so much for what my heart so desperately wanted. I then had to focus on something else for my little boy he needs me and God I needed him. So I started running which I am no runner but I started raising money for Friends of Serenity. I only did 5k but it became my main focus. If I was having a bad day I went out running. I did the couch to 5k which I did 3 weeks quicker than you were meant to but I needed to get myself out of my own head.

Then we had to go for genetic testing in Manchester with the specialist that gave me all the awful news. I panicked for weeks this was either going to give me my hope back or completely take it away from me. We got our results a few weeks later saying all our chromosomes were as they were meant to be. So what had happened apparently is just bad luck. I still can’t get my head around it but all the questions I have no one can answer them. I still couldn’t give up, I found out I was pregnant again which was the hardest pregnancy ever, I had to cut off from it to deal with it. I had loads of scans, paid for the bloods doing which told me everything was fine but I needed to be seen a lot to reassure me and right up until he arrived I panicked. I don’t think people understand how difficult a pregnancy is after any loss it’s stressful and worrying. The midwives were brilliant at trying to keep me calm, I cried at all my scans until I was 24 weeks pregnant. I was forever at hospital but I knew I was in the best place. They all knew my history more so with the condition my little girl had is really rare and they hadn’t heard of it before. But people need to talk as this happens to a lot more people than you think.

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