TFMR 20 weeks - how do I deal with the grief

[ammmmmo]

We had our 20 week scan on Tuesday which showed abnormalities with the heart, saw a fetal cardiologist yesterday who confirmed that our baby has 4 major heart defects as well as a 50/50 chance of a genetic disorder. After much deliberation we are deciding to TFMR. Please do not come here to comment or judge us on this.

I am currently 20+2, I’m feeling her kick and until everything is over, I feel like I’m living in a nightmare where I’m currently still pregnant but almost wish I wasn’t anymore. I have cried so much, it’s unbelievable that there are any tears left. The grief is absolutely tearing me apart, and I just wondered how on earth do you recover from something like this? We had a miscarriage last year also so this has been our second loss. I thought that was bad but this is so much worse. How much emotional pain can one person take..

I am so, so sorry for your losses. My heart goes out to you.

Sending gentle hugs x

So sorry. Life can be so unfair. Do you have any older children?

@LittleMissSleepyUK Yes we have an almost 2 year old. He is the only
thing giving me the strength right now to keep going

I am so sorry your going through this.
Sending you a hand hold and a virtual hug, will say a prayer for you.
God bless you all xx

I'm so so sorry, what an awful choice to have to make

I don’t know. I’m so sorry you are in this position.

I had a TFMR earlier than that. It was very difficult. And I think the later it is, the harder it is.

But I presume you have made an informed decision for the sake of your whole family. So, as hard as this may be, it is better than the alternative.

You will go through the motions, you will cope, you will get through it and one day you will realise you aren’t just going through the motions any more. You will have a new normal.

💐

Just sending a virtual hug and a hand hold OP. Grieve in your own way and be as selfish as you need to be. I’m so sorry

My heart hurts so much for you, I had to do the same at 22 weeks for my first, he had Anencephaly, which is not "compatible with life" I had to go through labour, although it is a long time ago now, I took something to "make sure" that the baby was not born alive and would cry, which was a potential issue as he was alive from the kicks and so on beforehand and would live for a few hours. It is the hardest thing I have ever done, They also gave me the option of carrying him full term, which I decided was not for the best. The hospital was very good with us, and put us in a private room and let my husband stay overnight. They gave me loads of drugs, first of all to make the baby be born, and also to make me inured to the pain and "not really there". I ended up in theatre under full anesthetic as they had to do a D & C. (I realise I am not helping here). They put the baby in a moses basket and took photos, they were very kind. How did I cope afterwards? - not well really, had a few dark months, everywhere I went there were new mums with babies and god knows I cried so many tears. Luckily I was pregnant again within 6 months and had my first son (monitored heavily) and within 18 months my first daughter, went on to have another two too, so just because it does not work out this time, it does not mean forever, but that is cold comfort when you are going through it. It is utterly miserable. I wish you love and strength xxx

Just wanted to send you love as you go through this difficult time. No words, just love and a handhold.

Hi OP, really sorry to read you are having to deal with this. I am 14 months post TFMR at 17 weeks and am happy to answer any questions you have if you want to PM me. Alternatively (and I'd recommend it) there is a whole community of women who have been through this on a specific TFMR board on the babycentre forum/app. They were an absolute god send to me in terms of support and made me feel so much less alone - as TFMR is a really lonely place to be.

Sending strength x

I am so so sorry you’re going through this. We had a catastrophic loss at 20W4D last April with monoamniotic twins. They were our miracle babies after 3 miscarriages, an ectopic pregnancy, and three IVF transfers.

From a practical point what helped us with the grief - the hospital let us spend time with them when they were delivered. They took their hand prints and foot prints. Where we live they were classified as a still birth and for some reason getting the death certificate with their names really helped. We had a memory box from the hospital with their tiny hats and blankets. My husband slept with them for months. We had them cremated as well.

From an emotional point, I took several months off work as I qualified for a maternity leave in my country after 19 weeks. If you can take time off, please do. We let friends and family in our grief and they helped with our other child and with meals. We accepted that we would be numb for a long period. I accepted that I would feel overwhelming rage and sadness that this had happened to us. I stood in the shower and cried a lot and accepted those feelings as real and valid. They were our much longed for children and we loved them and grieved them deeply.

It’s 10 months on now and I am pregnant with a so far healthy baby. Unfortunately I’ve become rather numb and detached from this pregnancy after our loss. But we did start to find joy in the little things in life about 4 months after the loss. And it does get easier each day to get out of bed.

Again, I am so sorry you’re going through this. I would not wish this pain on my worst enemy.

I'm so very sorry you are in this position and for your previous precious loss. I was in this same situation at the same gestation as you in 2019.

It really was the most terrible and heartbreaking time. We had a lovely baby boy, also incompatible with life. The only thing that kept me going was my 2 year old and talking with my husband.

Our hospital were great when the time came, we stayed in a 'suite' in the hospital, had as much time with him as we wanted, we took so many photos and so did the midwives. They took hand and foot prints, we had him blessed by the hospital Chaplin. I also brought a blanket, Teddy and hat for him which I slept with before we went in. We took another blanket with us to wrap him in, but brought that home in our memory box that the hospital gave us. The hardest part was having to leave the hospital with empty arms.

I wasn't entitled to maternity leave, I was honest with my work and they allowed me around 6 weeks off, which I needed in my role. The world seemed to carry on spinning whilst ours stopped. Around 3 months later things started to feel a little lighter and brighter. Things are much better with time, although that isn't helpful now. Keep talking to your partner and take your time.

Feel free to message me if you want and I will be thinking of you and your precious angel

Thank you for all your comforting replies, it has been helpful to read and I feel less alone.

@DifficultBloodyWoman You have hit the nail on the head by saying - “But I presume you have made an informed decision for the sake of your whole family. So, as hard as this may be, it is better than the alternative.”

It’s exactly this. Her condition will not kill her in the womb, but if there is no intervention immediately when she is born, plus numerous open heart surgeries throughout life, with no definite guarantee it can be fixed and if so would become palliative - is just not something that we want to put her through, but also my husband and I don’t feel we can go through that.

i do feel selfish because there is a chance of survival but what is survival if it’s a poor quality of life. It’s the hardest decision I have EVER had to make. I almost wish I’d miscarried so I didn’t have to make this decision.

So sorry you are in this situation. I’m currently 17 weeks pregnant and waiting on some results on genetic disorders and it’s breaking me. Thinking of you x

I am so sorry. It sounds like your little girl has a similar condition to what my daughter had-HLHS. Where the left side of the heart is severely underdeveloped. We opted for interventions and operations as there were no other underlying conditions. It didn’t matter in the end though. Despite operations and medication it was too much for her and she passed away at only a few weeks old. The most horrific time of my life.

In terms of grief. Nothing helps as such. Not for me anyway. You go through each day because that’s all you can do. You try to be kind to yourself and do things that normally bring you joy. Therapy. Lots of it. It has been over a year now for me and some days it is easier to carry the pain and some days it weighs very heavy. Sounds odd but I don’t mind the pain. The reason it hurts is because I love her. My pain is my love. I wish you so much strength and love. You will get through it, but you will not be the same. Be gentle with yourself and your body afterwards.

Thinking of you. I have had 3 pregnancies and had to have testing for a 50/50 genetic condition for each of them, and the waiting for the results each time has been one of the hardest things my husband and I have ever gone through. Hope your wait isn't too much longer and the result is one of good news. X

I am terribly sorry to hear this and can't even imagine what you are going through. My heart goes out to you xx
I don't know how you recover from this, I guess one day at a time is all you can do and let time heal your wounds.

i do feel selfish because there is a chance of survival but what is survival if it’s a poor quality of life. It’s the hardest decision I have EVER had to make. I almost wish I’d miscarried so I didn’t have to make this decision.

That is how I felt too.

There were so many confusing feelings, praying for a miracle or a miscarriage.

I was devastated, compounded by awful nursing care that gave me ptsd. I grieved. I cried. A lot. I changed the tv channel whenever I saw a baby or a mother and child. I threw myself into work. And I got through it. I don’t really know how. But now, years later, my life is ‘normal’. I can be happy again.

You’ll get there too. I don’t know what your path to ‘there’ looks like but you will find it. X

Good afternoon to you all.

I had a TFMR at 14 weeks for Edwards' Syndrome last year. It broke my heart, I've never cried like I cried for the couple of weeks between finding out there was something wrong and the delivery. I can tell you that time did make it better, the first few weeks were raw but we got through them together and survived.

I can also recommend a few other support boards. FIrstly, have a look at the Mumsnet Antenatal tests as there are quite a few recent accounts in there.

I get a lot of support on the Babycentre boards
https://community.babycentre.co.uk/groups/a3723405/termination_for_medical_reasons_tfmr

If you decide to try again I also like this board https://community.babycentre.co.uk/groups/a3873235/trying_to_conceive_after_tfmr

The charity ARC has a lot of really helpful true accounts from other people who have gone through this. They also have a private forum, you can email to register, so it's very safe and secure. Everyone there has been through this nightmare too

https://www.arc-uk.org/

Thinking of you x

We had an almost identical situation in 2020. Our daughters condition wasn't guaranteed to be terminal in the womb, but if she survived she would have needed lots of immediate surgery and then subsequent surgeries all through her life, with no guarantees, and very poor potential quality of life even if everything went perfectly.

We decided that we didn't ever want her to feel one second of pain, so horrendous as the decision was for us, it was the only choice we felt we had. You do anything for your children, regardless of how hard it is for you - and that's what makes you an amazing mummy. All your little one will know is the love and coziness of you, and that's an amazing thing.

I'd agree with everyone with regards to saying take your time and allow yourself to feel what you need to emotionally, but would also say please be aware of your body and push with doctors if you don't feel right afterwards. I didn't, and it was a mistake. Ended up needing surgery further down the line because I just assumed the weird feelings/bleeding were normal. Post-birth care isn't renown, in this situation its often even worse, so if you don't feel as you're expecting to, make your voice heard or have someone ready to advocate for you.

Also, please don't be surprised if your milk comes in. I didn't expect it and it threw me completely. I took the drugs to stop it but a little still came in and sat in total shock with maternity pads in my bra while my mum was dispatched to find breast pads from somewhere (which was tricky at midnight, bless her!)

You'll get through this OP. Take time in chunks - ten minutes at a time, then twenty, then an hour, two, three, half a day, and you'll get there xx

Thank you again for all your continued replies. It’s another middle of the night response from me - sleep isn’t coming very easily right now.

@FrillyGoatFluff Do you mind me asking what you mean in regards to not feeling right? As in pain/excessive bleeding/infection type things? Did you have an issue with retained placenta? Just so I know what I should be keeping an eye for.

i managed to get the procedure booked yesterday, it’s on the 21st Feb so another 12 days to wait. She will be 22 weeks by then. Every kick I feel now is a reminder of everything I’m going to lose 😔

@ammmmmo yes, I had a retained placenta. Haemorrhaged giving birth and had a transfusion and surgery to remove the placenta, which is where it all went a bit tits up.

I was bleeding and sore for three months. Saw numerous medical professionals, but wasn't until I saw a locum gp (who I will be forever grateful to), who sent me for an emergency vaginal ultrasound. The scan showed they'd left nearly half the bloody thing in place 🙄 was in surgery two days later to have it removed.

Ultimately, I should have pushed harder, and normally would, but I didn't feel able to. Which was ridiculous as I had every right and was really quite unwell.

As with all grief related things it’s time that heals you I’m afraid.

I was in a similar situation 7 years ago and it probably took me a good few years to feel stronger and in the last few years I am honestly fine with what happened to me.

Things year helped were; binge watching some really gripping tv series so I had to think of something else. Accepting that my sleep was going to be disturbed and just organising my life around that. 2am waking is the pits, so have a plan where you wake up and do something - not lay there with dark thoughts.

Do everything you can to enjoy your two year old. Really try and wring that out as opposed to shutting down and becoming numb.

Meet good friends. There were some friends who didn’t get it, but there were older people I knew that understood and would allow me to just talk.

Writing on here is also cathartic, so use this resource. Mumsnet does this stuff very, very well xxx