I have never posted but have lurked on this board for last 2 years. You have all been a huge source of comfort and sanity and I wanted to share my story to give hope to anyone else who might find themselves in a similar situation.
I have a beautiful DD1 who is now nearly 4. In May 2012 I found out I was pregnant for the 2nd time. Although we were planning another baby, the pregnancy was quite a shock and I felt extremely guilty - I went back to work when DD1 was 9m and felt incredibly guilty about trying to cope with another pregnancy, let alone another baby, when I'd barely seen my daughter for the past 2 years.
Anyway we went for our 12 wk scan and I was told baby was only 10 weeks, so too early for the scan. But I noticed the nuchal was visibly enlarged and asked - I was told it was too early to draw any conclusions and I would have to wait until 12 weeks for a re-scan. At 12 weeks I was scanned at the fetal medicine unit (UCH in London). With bloods I was given a Downs risk of 1:2 and I opted for a CVS then and there. I was terrified and agonising over what I would do if the baby had Downs. Two days later they called to let me know baby had Trisomy 18 (Edwards Syndrome). I was devastated but at the same time relieved as it was clear to me that I had to terminate as the condition is "incompatible with life" - never have I been so relieved to have bad news. Thankfully as I was under 14 weeks I could have a surgical termination, which was the worst thing I've done in my life.
Two months after the termination I was pregnant again. This time, I was sent straight to the FMU for the early scans and everyone was very reassuring. But I saw straight away that the nuchal was high again. The doctors didnt know what to say but I had another CVS. This time, the test was clear and I came back for a follow up scan. The nuchal had reduced (a good sign!) but the scan showed a reduced left chamber - an indicator of a heart problem. Two weeks later I was scanned by a fetal heart specialist who confirmed insipient hypoplastic left heart syndrome - baby would not survive without major heart surgery at birth. After extensive research we took the painful decision to terminate yet again.
A couple of months later we found out through one of the UCH research projects that baby had a rare chromosome deletion - this may or may not have been the cause of the heart condition. Although the two chromosome issues were ostensibly unrelated, I did not think I could ever have a healthy baby again.
In March I found I was pregnant yet again. This time I had written the pregnancy off from the start, and just cried and cried. To make things worse, I had a LOT to drink in the first 4 weeks - when I was convinced I wasnt pregnant - so extremely worried about what I might have done to the baby. This time round we decided to have a private scan and Harmony test at the FMC. The first scan showed baby was only 10 weeks but also showed, yet again, a visibly enlarged nuchal. I was devastated. But again they told me it was too early to draw any conclusions and to come back at 12 weeks.
At 12 weeks I was scanned at both FMU and FMC, where they did Harmony. Tests were clear and no anomalies were found although nuchal was considered "at the high end of normal". I worried throughout but in December gave birth to beautiful DD2. She is lovely and seems fine.
So... Despite what doctors tried to tell me, twice in a row does happen. But we got there in the end and baby J is doing brilliantly. Thank you all for your support durimg this time - you have taught me that I am not alone.
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My story - two TFMR but happy ending
6 replies
Brynhilde · 06/02/2014 22:22
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