How did you cope when going through all the tests and deciding to terminate

[Mrsbadger77]

I think I must be having the most stressful pregnancy ever. Firstly I had to go through a hell of a lot to get here- almost 2 years and lots of tests and treatment. I've had heavy bleeding on and off throughout ( I'm now 16 weeks) and I'm currently in hospital following on from a heavy bleed last night. At our 12 week scan they told us the baby had an abdominal cyst which proved to be an echo genic bowel. We were advised to test for things like CF and CMV. The test came back to say I am positive for CMV. Fetal medicine want to scan again and I'm sure will recommend an amniocentesis to find out if the baby has it or not. It can be very serious for the baby. So I'm fairly sure the baby will have it and we may possibly be advised to terminate.
I don't know how I'm going to get through through the next few weeks and how I will make that decision. I feel so low I just don't know how I'm going to cope.

I'm afraid I don't know anything about CMV so can't give any specific advice. However, I do know all too well being told your baby most likely has an underlying problem, being offered an amniocentesis and termination and the total fear, despair, anger and confusion that goes with it. How did I cope? 1 day at a time, 1 baby step at a time. I found support here and on specific forums for our babies condition. I held on to the fact that nothing is certain without amnio and scans often give false concerns. I didn't contact ARC (antenatal results and choices ) but have heard that they are very good. We found that every day got a little bit easier and nothing was ever as bad as that first day. Thinking of you.

So sorry to hear about your difficulties, OP. I found it helpful to get as much information as possible about my baby's condition and what the likely outcome would be if I chose to continue with the pregnancy. I read research articles about the CVS procedure, and then about my baby's condition, and I used to jot down a list of questions before my appointment with the consultant, which helped me get the information I needed. When I chose to terminate the pregnancy, I did so in light of this information, and it helped me live with the decision. I also accessed support from the clinical psychology department at the hospital, and found it helpful to talk over the pros and cons of termination vs. continuing the pregnancy with someone: I continued to meet with someone from the department for some time afterwards.

I agree with the poster above about taking everything one day at a time and dealing with things on as an and when basis. I also think it's important not to be rushed into making a decision.

Lists of questions is a good idea, I go to every appointment with a list. I find that making it helps me to order my thoughts a bit. It's so unbelievably hard but I've found that people are very supportive. This board is quiet but full of knowledgeable people who will help if they can

Thank you for your replies everyone. I had an amnio yesterday although I already know the results. We have to decide whether or not to terminate or carry on with 25%chance of child having severe neurological damage, deafness, blindness ...

This was a much wanted second child and at my age 38 I may not get another chance. It is so heartbreaking and I can't help asking why??

I'm so sorry you are going through this.

I would urge you to call arc, they are amazing.

I had a tfmr at 22 weeks after dd2 was diagnosed with trisomy 18. Her anomolies meant it was unsurvivable if she managed to make it to terms high was unlikely. I don't want to upset other posters as I know others have made different decisions but for us our decision was based around making sure our baby never felt pain. We knew that she would die at some time, for us the decision was to have a termination and ensure she didn't feel pain or suffering or to carry on knowing that the enviable would happen. As awful as it sounds I think it is an easier decision to make when the diagnosis is lethal iyswim. We also had dd1 to consider in the process, we wouldn't have been able to spend all our time at the hospital with dd2 if she had been born alive and that wouldn't have been fair on her (not having her mummy and daddy there while in hospital, unlikely to leave) or on dd1 having mummy and daddy away all the time and no parental stability. (I'm not saying that other families couldn't do this, just I know we wouldn't have been able to)

It is an awful situation to be in. Things have changed for me since dd2 and there is now a high chance I will never be able to have another.

I'm sorry your going through this. CMV is terrifying (I have a post currently as im scared shitless about not being immune and TTC) but I was trying to consider what I would do if I did contract it in pregnancy, and I honestly don't know the answer personally

I have come across CMV action UK though and it's run by women who do have children with congenital CMV and they might be worth chatting to to get an idea of how things could be/they may have made similar decisions to what you're facing

Thank you. If you are TV and genuinely worried about CMV get s blood test. If the go won't do it you could get it done privately. My private clinic would charge about £50 for it.

I've had the blood test and am negative but hope to test again before we TTC. My anxiety is too high so taken a break and I'm actually trying to catch it now (hope that doesn't come across insensitive) in the hope I can build immunity before another pregnancy. Which clinic does private tests? I plan to pay private if GP won't retest

It's appalling that we aren't warned about this, I knew nothing of it in my first pregnancy and thankfully was lucky not to catch it that time round

I've spent many unhappy hours asking why us and feeling angry that it's so unfair. It took over 4 years for us to conceive this baby, our first and I'm now already 35. I work hard to keep the bitterness at bay, especially when faced with parents who don't seem to do the best for their child. I try hard not to judge but it's hard.

Hi I'm So very sorry you're in this position. Please do call ARC they are amazing.
I found that what helped me was lists and arming myself with as much information as possible. I scoured the Internet for every scrap of information, every story I could find.
My ds2 was diagnosed with abnormalities at my 12 weeks scan at 18 weeks he had excess fluid and a echogenic bowel it also showed other possible abnormalities it wasn't possible to get a clear scan as due to other factors my pregnancy was very high risk and blood was obscuring the scan. My son was given a less than 20% chance of survival and a tfmr was advised. I would never ever judge anyone for the decision they make but I chose not to terminate.
In the end I went with my gut instinct alongside some excellent advice I received on here. I wish you all the best. Take care

Actually in the end we didn't have to make that decision it was made for us and we lost our little boy this morning. Ironically the test for CMV came back negative. I hadn't passed it on to him. I'm just numb now but I'm expecting that I will soon be feeling anger and bitterness. Just got a long waiting game to find out why it happened. We may never find out. It may make it easier if we were to find out if he had a serious abnormality. It's just so hard.

I'm so so sorry thinking of you OP

I'm so so sorry to hear that you lost your darling boy. It makes no sense at all does it? There are no words to make you feel better but if there were , I'd give them to you. Hope you get plenty of support and some answers in the near future. Did you have the chance to name your son?

I'm so very sorry. Thinking of you

Oh op I'm so sorry. I hope you get some answers.

It's a hard road but as trite as it sounds you will get through it. You never get over it you just adjust to a new normal.

Be kind to yourself