Successful pregnancy after termination for medical reasons- please share stories

[Thefrogwife]

Hello,

We have just had to end a pregnancy at 14 weeks after the first ultrasound showed significant abnormalities, including a massive nuchal reading of 27mm and hydrops with fluid around numerous organs and under skin. Don't really know how to articulate how I feel right now- the process was fairly brutal, everything has happened so quickly and at 33 I didn't really expect anything like this. This was my first pregnancy and we conceived very easily, maybe giving a false sense of confidence.

We have to wait until November to find out results of testing of the placenta etc, and I know no-one here is a doctor so not asking for any explanations or diagnoses, but if you've ever had a similar experience and then gone on to have a successful pregnancy, please help keep my spirits up until November by telling me about your kids. Thank you.

@Thefrogwife Hi there. I was always a lurker on mumsnet but reading your post I had to join and share. Firstly I’m so sorry for what you are going through. Any sort of baby loss is just awful, but a TFMR is so heartbreaking because you’re making a decision you don’t want to make.
I went through it at 22 weeks and it sadly still haunts me to this day.

We had a TFMR at 22 weeks in November 2019. I spent 47hrs in labour because our beautiful boy didn’t want to come out. At the 12 week scan, the Nuchal was high, so we had further testing. Wasn’t happy with the hospital so we went for private scans and tests. All came back pretty much clear. At 16 weeks I went for another NHS scan where they could see a potential heart anomaly so I got referred to a bigger London hospital. Then it all went down hill. All our tests were coming back clear, but all the scans we’re getting worse, so we met with a team of geneticists who took mine and my husbands blood sample to test alongside baby’s Amnio sample. Sadly at 21 weeks we had a final scan where the situation was so bad (hydrops everywhere, brain bleed, so many other issues), the consultant just said I’m so sorry and we knew the decision had been made.

We were still waiting on the results after I gave birth - if there was a chance of us keeping him they would have rushed, but because we had to terminate the rush was “cancelled”. This was November 2019.
December 2019 we got the results and very shockingly my husband and I are both carriers of a super rare condition, of which there are only 50-60 known medical cases in the world. As a result we always have a 1in4 chance of our babies having the condition.

End of Jan 2020 I found myself pregnant again. Like you, we got pregnant straight away the first time, and as luck would have it the same happened the second time. I contact the genetics team again and they asked me to go for a scan at 8 weeks to check the pregnancy was viable, then at 11 weeks I had a scan and CVS testing. It was horrible and emotional, but necessary. We got our result a week later and thankfully baby girl was just a carrier like her dad. No further testing was required and I was released to the antenatal team.

Thankfully, apart from PGP through the whole pregnancy, the pregnancy was smooth sailing, and our baby girl was born in October 2020. She’s now a very lively toddler who has brought so much joy and light into our lives.

Im now expecting again, but only 4 weeks so very very early. I’ll have to go through testing again but at the moment, trying not to think about it too much.

I hope the hospital has offered you some counselling? This really helped me and I carried it on during my next pregnancy. It’s such a horrible situation and I’m so so sorry you’re experiencing it. I wouldn’t wish it upon anyone xxx

Thank you so very much for sharing your story- my husband and I have both teared up a bit reading it.

We've not been offered counselling but have been pointed towards ARC as an organisation who could help. I do worry about how we might feel and deal with our feelings going into another pregnancy.

I really hope everything is OK with your current pregnancy, I'll have my fingers crossed for you. xx

No problem at all. I hope it’s given you some reassurance that there is a chance for a healthy pregnancy in the future.

I had called ARC a couple of times and they were lovely. I personally found the face to face counselling more useful.
I think future pregnancies will always bring anxiety, especially until you have some answers. Even once we got the all clear with our daughter, my husband was still on edge until she arrived.

Thank you for your kind wishes. I really hope you get some answers soon and wish you all the best for any future pregnancies.
Please feel free to message any time if you have questions. It can be a lonely road xx

I had a TFMR in Sept 2021 as our 12 week scan showed fatal abnormalities. We didn’t know at the time what it was, however for various reasons we were advised to end our pregnancy at 15 weeks. Post-mortem results came back as T18. I felt like my world had collapsed. We had to endure a labour and delivery and I thought I’d never recover…. I did!

I’m now 27 weeks pregnant with my rainbow baby. I’m not going to lie and say it’s been straight forward, it’s been incredibly anxious at every step, but so far every scan I have had is looking good.

At the time you’ll think your world has ended, but you'll survive. You don’t get over it, but you slowly learn to accept it.

I’m here if you ever want to chat. Take care x

I had a TFMR in June 2021. It was the worst month of my life, it was after an awful 12 week scan- we later found out the baby had T18. We decided we would wait to try and get pregnant again but did have a drunken shag 3 weeks after my TFMR.. thought I couldn’t possibly get pregnant that quickly.

Well I was quite wrong! I am sitting here feeding my extremely healthy baby boy, he is 4 months old and has passed every health check with flying colours. Pregnancy was also uneventful… scans were very scary for me though.

So I have an extremely healthy daughter who is 3 and a very healthy 4 month old son. With 3 miscarriages and a TFMR inbetween. I am 30, husband 35 and we are both extremely healthy. I honestly think it is just bad luck.

I really hope you are looking after yourself, it is an awful thing to have to go through. Odds are totally in your favour for a healthy pregnancy next time, although it may not feel like it now. Good luck xx

Hi all, finding this thread as am going through the same thing at the moment, having a TFMR next week after finding that my baby’s liver and bowel are growing outside their body at the 12 week scan.

It doesn't look like anyone’s written for a while but hopefully someone with a positive perspective will find this!

I was low risk for the 3 they screen for at 12 weeks, but will obviously have further testing. How long did it take you to get the results of this testing after TFMR? And is there any other genetic testing my partner and I should be looking into?

I have the added trouble of having a uterine abnormality which was discovered at a 7 week scan - a complete septate uterus, which makes any pregnancy I have in the future high risk anyway. I think most advice will be that this is unrelated to the problems with my baby, but it’s hard to understand having two such awful shocks.

I’ll be waiting to TTC for quite a long while as I need to recover and grieve and I’d like to look into the possibility of uterine surgery.

I guess I just want to know whether there’s any further testing/ screening/ private specialists that I should be looking into the understand what happened with this pregnancy?

@Katyhart I’m so sorry to read about what you are going through. I hope you have lots of support around you.

I’ve had both CVS and Amnio tests throughout my 3 pregnancies. If I remember correctly, we received the first set of results after 3 days, then the full set of results took another week or so.
In my first pregnancy which sadly ended in a TFMR, the Amnio came back clear so we had further genetic testing which was all arranged by our hospital - I don’t know if all hospitals would offer this. It took about 3 months to figure out what exactly the condition was but that was unique to our case.
Any further pregnancies were managed by the genetics team in the same hospital for the first 12 weeks until we got the all clear from the testing.
I’m not sure how far along you are but u believe you can ask for a post mortem.

It’s an awful situation to be in and I’m sorry you are going through the same. I hope you get some answers through any further testing you might have, but please know it’s nothing you’ve done.

I have 2 beautiful, healthy daughters now, so please know there is light at the end of the tunnel x

@Peaches57 thank you so much for your response.

Yes sounds like similar situation for me, as our results were low risk, more genetic testing will be done post-mortem. I was only around 13/ 14 weeks and had surgical TFMR so not sure how detailed the testing can be.

It sounds like that does take around 2 months and then we’ll get an appointment with a geneticist at the hospital.

I’m trying not to think about that next step too much as just wading through sadness and shock of it all for now! But obviously it’ll be key to get more information at this appointment.

I’ll also have an MRI to assess my uterine abnormality, and then look into the possibility of private surgery. So it’ll be a very medical appointment heavy year!

I’m so pleased to hear you have two lovely daughters. It’s hard to dare to hope for that at the moment, but I’m hoping this will have just been a very sad false start for me - I’m peering for the light at the end of tunnel :).

Thanks again for your response, it’s been nice to read today.