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My story - two TFMR but happy ending

(7 Posts)
Brynhilde Thu 06-Feb-14 22:22:43

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.

X

bramblina Thu 06-Feb-14 22:26:44

What a sad time you've had and I'm so glad you got the happy ending. It's bad enough to have to suffer an ordeal once but twice is incomprehensible.

Thank you for sharing. Good luck for a healthy, happy life xx

diamondlizard Thu 06-Feb-14 22:35:18

congratulations well done on being so brave
enjoy your lovely baby xxx

Monten Thu 06-Feb-14 23:03:14

Thanks for sharing your happy ending - sorry you have had such a hard time of it. 3 weeks to the day post TFMR myself (for Edwards too) the thought of it happening again is just too much to contemplate, it must have been devastating.

I've always found the 'extremely unlikely to happen again' line to be not particularly comforting. Just because you've had one dose of extremely bad luck doesn't make you any more or less likely to have bad luck again!

Congrats on your lovely family

CrispyFB Fri 07-Feb-14 20:31:53

I'm so sorry to hear of your losses and your journey. Congratulations on your DD2 - I'm sorry you had to have a scare with her as well but very glad to hear it was, for once, just a scare!

mb2512cat Sat 08-Feb-14 22:52:40

So glad it worked out for you in the end. I have had two tfmrs too. I then found out I was a carrier of a balanced translocation and that both my babies had been unbalanced. We then went on to have three IVFs with PGD, a type of genetic screening, but they didn't work. Most of the time the embryos were unbalanced, and only on one occasion did we get two unaffected embies, but they didn't take. We were going to go down the route of egg donation, but then I found that I've got a natural BFP. We'll find out in March if the baby is healthy or not. Let's hope our luck is finally going to change...

Brynhilde Thu 20-Feb-14 20:31:01

Thank you all for your kind and supportive words - it means a lot and my thoughts are with all of you who have had to go through similar things.

Monten, so sorry to hear about your loss and hope you are beginning to feel better. I agree, this whole episode has completely shifted my perception of probabilities, but I did get there in the end and I am sure you will too!

Mb2512cat - sorry to hear everything youve had to go through and really hoping you will find its a happy healthy baby this time!

Thank you all again and wishing you all the very best.

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