Support for Women who are TTC or Pregnant Following a Termination for Abnormalities- Thread 8

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Welcome to the newest thread of support for those ladies who are pregnant or trying to conceive after terminating for abnormalities (tmfr). Since this thread first began (almost ten years ago!) there have been stories of heart break, sadness and fear, but from these stories there have also been stories of happiness, success and most importantly, hope.

@Brooklily that’s great news! Yes, I feel that the whole pregnancy is a waiting game and time seems to just drag on! I’m sure my previous non complicated pregnancy went much quicker! All the best for your scan.
@Kiki275 what is the limit? I think I missed this!

They were to do with the lady who has Downs and wants it removed from the list of conditions you can have a tmfr until full term.
The follow up thread (now removed) was someone complaining that other posters called her out on being pro-choice because she was only pro-choice until 24wks x

@Brooklily that’s great news. I hope your scan goes well.

@Kiki275 I saw some of the the threads and news coverage, it made me feel sad. My opinion is unless someone has been faced with a decision to make, it would be difficult to fully understand the complexities behind it. It also doesn’t help that tfmr seems quite a taboo. I hope everyone that saw them is ok.

Can I ask where did you all have your NIPT tests done, I am finding it very hard privately via our nearest fetal medicine hospital. I am fully prepared to pay but I am being advised to wait until after the combined is completed, if high risk it will be free and that they see it as a conflict of interests for those who want to pay.
I waited a week for my combined results in my tfmr pregnancy, and I received a call at 07:40 when I was alone and taking a shower, I just don’t want to go through that again. The fetal medicine hospital said I should be able to get my results within 2 days by calling up and they would be looking on my behalf if I was under their care, my local hospital hasn’t offered this and to be honest seem desensitised to our scenario. How has everyone else’s care been? I don’t know if it’s me expecting too much.

Thank you everyone - baby is growing well and had a lovely strong heartbeat. Fewer worries to be thinking of now at least and I'm grateful to have got this far.
Four weeks until the 12 weeks scan where it all went so wrong last time but at least I can relax a little for now.

@Kiki275 @URMysunshine4 yes, I agree, the decision to have tfmr is very complex and very emotionally draining one!
I had my NIPT before the combined screening privately. The FMU were in full support for that and they said that would be better for me. They asked me not to have a full combined screen after that and just to have NT and papa-a. That worked well for me but of course I had to pay for the NIPT which I didn’t mind. Both arc and FMU advised me to have NIPT just for 3 major syndromes.

@Brooklily great news - first major hurdle over with!

@URMysunshine4 I had similar this time, hospital wanted me to wait until the scan but I guess I could have paid for NIPT privately. I waited but my decision was based on 2 things. My harmony I had done at 10 weeks last time came back inconclusive, they said the earlier it is done the more likely that is, it was probably to do with the baby not developing properly and there not being enough fetal DNA in my bloodstream but I knew that another inconclusive result would be so hard for me and I'd be better off waiting. Also for us the money was a lot and we have so many other things we need to pay for that I decided it wasn't worth it. It's different for everyone but if you are happy to pay and really anxious I would just pay for it and not discuss it further with the hospital. It's probably worth me saying that as I had a CVS as I had such terrible odds after every scan - including DS who was fine, I was convinced my odds would be like 1-20 and I'd have a CVS anyway so didn't think I would have to wait for harmony / NIPT. You could have knocked me down with a feather after I got odds of 1/442! Our harmony results came back within a week although hospital did say they would take 2 weeks. Hope this helps!

Hi Ladies
Looking for a wee bit of advice and not sure where to turn. We had our 20 week scan today after a super positive harmony test at 12 weeks and were advised we had three soft markers for edwards. We did an amnio there and then as we were at the FMU so need to wait until Friday for the results. I just wondered if anyone had heard of this being possible? I don’t want to fall down the google trap but struggling with feeling baby move knowing we might need to make a difficult decision soon. Sorry if this is the wrong place to post, just know we will ttc very quickly after if our nightmares are confirmed as I’m 35 and we suffered a mc last year. Lost is all we feel

@happygolucky20 I've no advice unfortunately as my tmfr was completely unrelated. If none of the lovely ladies here can help, Id suggest contacting the ARC, they may have more statistics and information for you at this awful waiting stage. Keeping everything crossed for you xx

@Brooklily lovely news. I hope baby gets stronger by the day xx

@happygolucky20 I'm sorry you are going through this. I had a TMFR last year as my baby had Edwards but it was very obvious at the 12 week scan that lots was wrong so I'm afraid I can't offer any helpful advice really. One thing I would say is see if you can speak to the doctor / sonographer now that you have had time to absorb the shock a bit and ask any questions you have and exactly what they saw and how likely it is that the markers mean Edwards. And is there anything else they could mean.
My son had a thick nuchal and was a bit small plus my blood results were terrible (again at 12 weeks) and I had a CVS and he was fine, so it can be just that they want to triple check things but sadly it's very hard on the parents emotionally. I really hope that all is ok for you x

Thank you all. I have my booking appointment on Monday so hoping to chat it over with the midwife then. I have looked and I had no idea so many places do the nipt. The thought of going for scans/ testing scares me so much, so I haven’t booked anything yet as I just daren’t.

@happygolucky20 I am sorry you find yourself here. It’s such a hard time waiting for results, time seems to stand still.

I had a TFMR as our baby was diagnosed with edwards, the real alarm bell for us was my bloods, my hcg was low and my Papp a was only 0.07 which gave me a very high risk result. The NT result was 1.4. Nothing was seen on the 12 week scan. I was referred to fetal medicine and the consultant found 2 markers common with edwards but he did advised that they were only markers and it wasn’t definitive. Unfortunately, the cvs then confirmed it for us.

I would 2nd the recommendation for arc, it can really help if you need to talk things over.

I hope things work out for you xxx

@URMysunshine4 if you feel like you don't get the right support from your midwife I would recommend seeing if there is a head midwife/ matron you can speak to at the hospital/ FMU. I spoke to the matron who is head of the midwives at the FMU at my hospital, I had spoken to her before as I'd made a complaint (looong story) but I called her when I found out I was pregnant and it really helped. I didn't get everything I wanted, I had to wait for the harmony as per my previous post, but she was really helpful, arranged my scan for 8am with a midwife sonographer who knew my history and she explained that they don't like to do certain things early in case they miss something that they would have seen even a few days later. That really helped and I felt heard and supported.
Unfortunately you don't often get the support you should after a loss unless you ask for it and push, it's sad as it should happen automatically.

My 20 week scan was booked for 21+4, I went for a cardiac scan today - all was fine - and I asked them to change it to the day I am 20 weeks. The receptionist refused and said 21-22 weeks is their standard, I was going to call the matron later to ask her to help but I think the receptionist read my notes as she came over while I waited and said if the consultant today was happy to change the date she would do it. I think they get a lot of people just impatient to find out the sex so they are strict about changes but it was nice that she took the time to check my records and realise I'm just terrified- doesn't always happen.

Thank you @Seahawk80 that’s some great advice.
That’s great news regarding your cardiac scan, I hope you get the earlier date xx

Thank you everyone for your comments. We have been told to plan to terminate as we have four markers so baby isn’t right.

Can I ask, have you all conceived quickly after? I can’t imagine not being pregnant now and I just want to get back to being pregnant as quickly as I can but that might just be the shock etc

@happygolucky20 if the worst happens the best advice I can give you is to focus on the baby you are carrying now.
I miscarried before going on to get pregnant with the baby we lost to TFMR and I never mourned the miscarriage as I was in so much of a rush to get pregnant again. It caused a lot of problems for me mentally and my relationship with my husband.
With Max, our son who was so poorly we had to end the pregnancy at 16 weeks, we spent a lot of time mourning and talking about him. We were able to spend time with him and make memories when he was born. We announced him to our friends and family and bought keepsakes with his name and date of birth. I'm now so grateful we decided to spend that time focusing on him and ourselves. For us it made it real and meant he didn't just disappear.
That being said I'm 8 weeks pregnant now and it took 3 months after our TFMR. It can take a while for your body to be ready to conceive again.
Sending love and strength at this time ❤

Thank you @Brooklily, we had a miscarriage before this baby too so I understand, I just pray the two aren’t linked and that this is something we need to go through again. We are currently 20.5 weeks so dreading having to deliver her but know I just need to be brave. We had 7 months in between both so I feel I grieved but I am also aware how obsessed I was with getting pregnant during that time which really wasn’t healthy and I certainly don’t want to repeat.
Thank you for writing back x

@happygolucky20 I'm sorry that it doesn't look good. I agree with @Brooklily , I didn't really take any time after my first TMFR to mourn and just wanted to get pregnant, it took 5 months and then we very sadly had the worst luck and had another TMFR, this was about a week before lockdown and so everything felt surreal and we didn't really have time to mourn, I got pregnant again within 3 months and miscarried. After that we took a 6 month break and I had counselling and it really helped. I found this pregnancy tough mentally especially in the first 12 weeks but the break definitely helped and I felt less "desperate ". You have to do what feels right for you and I know that your body and hormones just want to be pregnant. Sending love x

@happygolucky20 I'm so sorry to hear this. I'd echo what the others are saying and take time to mourn. I went into my tmfr pretty blind so didn't know what choices I'd have but all staff involved were amazing.
Think about what you'd like in terms of the birth, staying with baby, holding them afterwards etc. Also funeral wishes etc.
I was recommended to wait two periods before TTC but start tracking your cycle as soon as you are able. Huge hugs from me xx

@happygolucky20 so sorry you find yourself in this situation, I was also told bad news at my 20 week scan and delivered my daughter sleeping at 22+5 in March this year. I agree with everyone else, if your worst fears are correct then mourn your little girl. We spent all night and the following day with her in a cold cot. Held her and cuddled her. I know this is a totally personal choice so you do what is right for you! If you have any other questions about the birth etc then ask away ❤.

I waited 2 cycles as advised by my doctor and lucky enough to conceive in June. I am nearly 7 weeks and it hasn't been easy I tell you that. The excitement is totally gone and the constant fear and anxiety is taking over my life.

Most of all be kind to yourself and look after one another.

Hi ladies thought I would update, after spotting since Friday and then had quite a big bleed this morning, on the day of my early scan at the hospital, I was totally convinced I was miscarrying and that the baby would not have a heartbeat. I was wrong! Our little rainbow blob was there on the screen with the heart flickering away. I know it's early days but this is another milestone. I have another in 2 weeks.

The reason for my bleeding is I have a small hematoma, had never heard of this until now. They said it was so small my body should absorb it or I might have some more spotting and to rest as much as possible but they didn't seem too concerned. I can breathe slightly for now!

@No1worrier congratulations! So pleased for you.

Forgot to add I'm 6+3 today

Thank you @Seahawk80 @Kiki275 @No1worrier for taking the time to message back, my husband finds it odd that I find so much comfort on mumsnet, in knowing it’s not just us, that others have been through this nightmare before us and come out the other side.

I have so many questions and so many thoughts but just to know it is possible to conceive after this and that it isn’t the “end of the road” for us is such a help. We will never replace this loss but I so desperately want to be able to give my husband a child when he is such a wonderful stepdad to my daughter (from a doomed loveless relationship in my twenties). Seems so unfair that I can have a child with an arse and yet with the man I married and adore who is genuinely a lovely guy with all the right morals we have so far only managed a devastating miscarriage and now a daughter who might be too poorly for this world. If my husband read this he’d say, life isn’t fair, get on with it.

Anyway, thank you again!

Ps congratulations @No1worrier for the positive news today!!

Hi Everyone,

I'm so glad I have found this thread! This time last week I was in the middle of a TfMR at 23 weeks after an amnio showed DiGeorge Syndrome. Everything had been normal except a minor abnormality at the 20 week scan that apparently 1 in 100 people have with no issues. We were offered an amnio but very softly and told that it was very unlikely to be DiG. When the results weren't back after 2 weeks I got more and more stressed but it was still a shock when we were told. The geneticist we spoke to explained that the genes missing were very likely to cause serious lifelong problems and my partner and I had agreed that we didn't think it would be fair to continue the pregnancy, despite that being heartbreaking for us.

The hospital have been fantastic, and we have a specialist counsellor lined up for September. We are waiting results to see if we have DiG.

I know it's early days but at this point I feel both that I can't wait to be pregnant again because I desperately miss the kicking, and that I can't see how we could ever take the risk again. There's just so much that can go wrong and we were too terrified to try for ages. We finally thought we'd give it a go, got pregnant straight away but ended up here. It feels like being happy is a thing that happens to everyone else.

There's also the guilt and constant fear of being judged. The process is so cruel. But I do know that we did it for the right reasons and it is comforting to see so many others who have had the very worst happen and that we are processing it together.

Sorry for long (first) post. Catharsis!

@CornflowerBlue100 I'm so sorry you find yourself here. It's one of the worst clubs to be in but we all know exactly what you're feeling.
TTC and pregnancy after tmfr is a huge emotional rollercoaster but we'll support every step of the way.
Take time to heal and grieve, be kind to yourself xx