TFMR during Covid

[Taisu]

Hi all, I was recently given the devastating news that my baby has tested positive for T13. We have made the heartbreaking decision to opt for a surgical TFMR.
I’ve been advised that due to covid I will need to undergo the procedure alone and my husband cannot accompany me.
I just wanted to know if anyone else has had to do this whilst we’ve been in strict lockdown? How much of the time will I actually be alone? I’m already dreading it but knowing I will have to do this on my own is just awful.
It’s been so hard without the support of friends and family, not being able to visit each other or do anything to keep my mind off things. I wonder if anyone has any advice/had a similar experience in lockdown.

Hi, I’m so sorry you are going through this, my baby also had T13. We didn’t find out until around 19 weeks and then when we went back to discuss with the consultant she did another scan and our baby’s heart had stopped beating, I was induced in June 2020 and he was born one day before 20 weeks. I’m afraid I can’t help in terms of the surgical side of things as I didn’t go through that, I was in labour for over 24 hours but thankfully my husband was able to stay with me the whole time, this was in the first lockdown. It is worth giving Arc a call if you haven’t already? I’m sure someone else will come along who has been through a surgical procedure. It’s such a tough time but try take it day by day, or even hour by hour where you have to and you’ll get through xxx

Thanks @notinthestarsigns. So sorry you had to go through this too. Do you mind me asking why your baby’s condition wasn’t picked up earlier? This is my first pregnancy and now I’m so worried about another attempt.
I will contact ARC and see if they have any advice. I have also contacted the hospital to see if they have any support on the day.

Hi, I also had a TFMR in September last year. I stayed over night in a ward (had to be in the bed to hold my place in theatre)as was an emergency op, as i was at the last point at which surgical was offered. Luckily that meant 8am so i wasn't hanging about. My partner dropped me at the ward and picked me up the next day from outside the hospital so it wasn't too long alone.

I'd like to reassure you, the operation was quick, you're completely knocked out and after the op i just had to wait a couple of hours to regain sensation in my legs (as they give a spinal injection). We had my mother in law come to stay for a few days as needed the help to just mentally recuperate and she helped with our toddler as I just wanted to rest for a day or two. Though we weren't in a full lockdown then... I still say if you need someone to come over and support you, just do it. I think of all the reasons for 'breaking the rules' this is a very valid one.

Recovery was quick, you bleed for a while as the body clears itself out. My periods resumed after a month... and we're trying to concieve again, though of course after this it is much scarier.

Take care of yourself x

No not at all, that’s fine. Concerns were raised at the 12 week scan as my baby’s NT measurement was 4.6. I had a consultant scan at around 13 weeks and at that appt things didn’t look good. Because of a few concerns at that time I was basically just told to come back in 4 weeks time, but that it was likely I would miscarry in that 4 weeks. At 16 weeks I had a midwife appt and she found the baby’s heartbeat. Then just before 17 weeks I had another consultant scan where everything was looking a lot better, the consultant did an early anomaly scan and found no issues except the original issue with the raised NT measurement. We were supposed to have an amnio that day but couldn’t because the amnion and chorion had not yet fused. This all meant that I was nearly 18 weeks by the time I had the amnio, and then had to wait for the results. I spoke to Arc several times while we were going through it all and did find it helpful, we were the same in terms of not being able to have the support of family and friends due to lockdown.

I was exactly the same as you about the worries about it happening again and it was my first pregnancy too. I think for some people it helps them to try again soon after, but I needed time, and we also had been told to wait until after we had the post mortem results which took about 3 months. Thankfully we were told there was nothing to indicate that it is genetic in our case.

I am now pregnant again, I’m around 8 weeks, this pregnancy is going to be an emotional rollercoaster I’m sure, but fingers crossed all will work out, I’m just trying to take it one step at a time.

It’s something that you don’t think will happen to you isn’t it, that’s how I felt anyway, until it did.

Thanks for sharing your stories.

@LittleLottieChaos so sorry you went through that. Thanks for explaining. How far along were you when you had the procedure? I’ll be 14 weeks when I have mine.

@notinthestarsigns gosh that sounds like quite an experience. So glad to hear that you are pregnant again I’m sure it will be a much better experience.
Absolutely didn’t think this was going to happen to me. Going to that first scan with such excitement and then your life is just turned upside down. I’m 31 so I’m hoping I still have time on my side but I’m still terrified!

@Taisu I was about 13 weeks so similar to you. Found out with a high nuchal fold at 12 weeks and then a CVS test, was grateful they had me booked in super quick for the procedure.

❤️ Sending you my best wishes. Mumsnet has been a really useful resource for me. It’s reassuring to hear other people’s stories and to know you’re not alone!

I assume you’ll get some follow up info that will assess your risk of future pregnancy issues.

Thank you @LittleLottieChaos. We are getting some genetic testing done so hopefully we can understand if there will be issues if we try again.

When I left my scan last Friday I did feel completely alone. I’ve never really used forums before and although reading some of these stories makes me feel less alone I’m sad to know many women have had to go through this

Hi @Taisu, sorry to hear your story. I also recommend ARC - their website and phone counselling are excellent resources. And I recommend the BPAS website for practical information about the procedure and after effects.

I had my tfmr last month at 22 weeks. Our baby had T-18. We went to a BPAS clinic, which had the following procedure:

Some days prior: telephone consultation to discuss the referral from our NHS hospital

Day 1 - go in to give bloods, speak to a nurse to fill our forms and undergo a procedure to have matchstick-size rods inserted into your cervix (v similar to a smear test). Maybe about 1 hour all in all and my partner was able to be there, but not to go into any of the rooms for the discussions / procedure with me

Day 2 (next day) - surgery under general anaesthetic, which took 5-7 minutes. I had about 30 min recovery time after on the ward. We got talked through things before and after, so all in all it took a few hours. Partner was there throughout except in the operating theatre

I had no pain afterwards, but had bleeding for about 3 weeks. It was very off and on, but felt like a medium period at its heaviest. I also had very sore, lactating boobs for about 2.5 weeks. My next period came 5.5 weeks after the tfmr. There’s an ongoing Mumsnet thread for women who are pregnant/trying to conceive after a tfmr, which is very welcoming and you may find reading the threads helpful (I know I did).

Wishing you all the best.

@SusanSue sorry you had to go through that. Thank you for sharing your experience. I’ll take a look at the BPAS website.

I’ve seen the thread on the women TTC after TFMR and it does feel me with hope. Part of me wants to start again straight away but part of me is absolutely terrified!