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TFMR advice

(34 Posts)
39Suzy Fri 20-Apr-18 07:27:47

We made the heartbreaking decistion to TFMR earlier this week at 24 weeks as our little boy has a severe brain abnormality. We dont even know if he would have reached term and if he had, would have physically and mentally disabled, even to the extent we dont know if he could have breathed unaided. I know we are making the right decision and had the first part yesterday so cant feel.him moving and not feeling 'pregnant' but am just crying constantly.
We went through the bits that come next and have agreed to an autopsy (with the geneticstesting we are having we are hoping for some answers.... our initial results were clear and the nature of the malformations indicate interuption/ infection in weeks 5 to 8) but am struggling with the decision to see him after he is born. Anatomically he will look perfect, just like a small baby, and would welcome any experience with this. I think i am scared as i dont want to be haunted by the image however, think it will be best in the long run. I am hearbroken

Waggily Fri 20-Apr-18 15:29:53

I'm so sorry you're going through this. I had a TFMR about a year ago for Edwards Syndrome, it is truly shit.

I wasn't sure I wanted to see my little boy as I was scared but as the days passed, I felt that was something I might regret. So my husband arranged with the hospital for me visit our little boy. They were so kind and respectful and the whole experience was helpful for my grief. My husband didn't want to see the baby and that was fine too.

You could clearly see my son had some issues but they weren't horrific to look at. And if you just concentrated on his face, he looked just like his big brother, same mouth and nose.

I like having that memory as I have so little else if his and i will always be glad I saw him. It is very personal though. We also asked the nurses who helped is through the procedure to take some photos of him, so we have those if my husband changes his mind.

It is such a personal decision but if you are in anyway tempted, I would see you're little baby, I don't think it will be as awful as you imagine.

nervousFTM Fri 20-Apr-18 20:10:34

@39Suzy my heart goes out to you lovely. I'm only 12 weeks and just through a massive scare (had to have CVS but we were lucky and all is okay) - which I know is nothing compared to what you are going through, but just goes to show these babies are little heartbreakers right from the get-go. @Waggily has a really good answer to your original question and it might help you get closure in some way. Good luck with whatever route you choose - and be comforted it will be the right one for you. So much love to you and your family xxxxx

Corneliasedet Sat 21-Apr-18 10:05:42

Hi. I’m so sorry you and your family are going through this. It is heartbreaking and so hard to deal with. I had a TFMR almost exactly 8 years ago for T21 and my son was born at just shy of 22 weeks. I found the idea of seeing him after he was born really scary and when it came to it I didn’t feel able to hold him but did see him. He was just a very small baby with darker skin (usual at that gestation). I’m glad I did see him and now wish I’d held him (and have never got over the fact I didn’t). I think if you can, seeing your son will probably help accepting the reality of the situation and there is some comfort to be had. I still remember that my son had long fingers like me and his dad and had his sister’s nose. I’ll be thinking of you. It is such a difficult process to go through and be kind to yourself as much as you can.

CyclingFanGirl Sat 21-Apr-18 11:48:24

@39Suzy I'm so sorry you are having to go through this, it's one of the worst experiences in the world.

We had a TFMR at 21 weeks 11 months ago. I can't tell you what to do, but want to share my experience.
We were also told that our baby would 'look normal' and I was certain I wanted to hold him. DH was much less certain (some context, I work in a profession where I have seen lots of people die, albeit not babys, DH had never seen anyone die). During the induction we had lots of time to talk about our wishes with the amazing midwives who looked after us. They treated us with such respect and were so mindful of the fact that this baby was our son, regardless of circumstance. He was delivered onto my stomach with immediate skin to skin contact, I held him, then DH held him and I held him for hours after that. They gave us a cool cot so we could spend more time with him if we wanted and arranged for photos to be taken and made footprints on a card. The photos are in a sealed envelope, I have never felt the wish to look at them. After many months we have framed and hung the footprints with other family portraits in our living room because that feels like the right place for them.

I am really grateful that we have a chance to hold our son, but extremely aware that it's not for everyone. Only you can make the decision and it maybe that you both feel differently about it, that's fine too, there is no right or wrong. I would not put pressure on yourself to decide now, but speak to the midwives looking after you during labour, they will be able to help you through.

Thinking of you flowers

39Suzy Sun 22-Apr-18 22:30:28

Thank you all. Our little boy was born this morning after 18 hours in labour. I held him after he had a quick clean then held his hand this afternoon when he was blessed. He looked perfectly peaceful, just like he was asleep, i was very comforted by the decision to do this and felt very at peace with him. We are having photos tomorrow too.
Thanks again for taking the time to reply and helping in my moment of need.

nervousFTM Mon 23-Apr-18 19:48:18

@39Suzy what a beautiful update. Thinking of you and your family xx💐

CyclingFanGirl Tue 24-Apr-18 20:59:28

@39Suzy Thinking of you and your family. flowers

39Suzy Thu 26-Apr-18 13:35:05

The last few days have been so incredibly hard emotionally. I have cried and cried replaying the last few weeks over again.
I spoke to the bereavement MW this morning as she had left a message and i knew she would call back. Our photos will be ready next week. We have also had the initial report from the geneticist and a follow up appointment for next Wednesday.
I feel completely heartbroken. I know time is a healer but just sobbing at the thought of the next few weeks and raking through all the test results...i know we need answers and want to get it over with as soon as possible. Any support from anyone that has been through this would be appreciated d

mytether Thu 26-Apr-18 14:16:10

Hi @39Suzy. I haven't been through exactly what you have but have had two TFMR. So I think I understand something of what you are experiencing. These early days are extraordinarily tough on so many levels. It's exhausting to have to somehow live with your grief and as you say, think about results, talking to medical staff, etc. I just said on another post that I felt very isolated and alone, even though my husband and family were there for me. But to me, as a mother losing her baby, it is a deeply personal thing, partly because you were sort of the only person who 'knew' them.

I do want you to know that you are not alone though. So many of us have unfortunately been through something a little similar. You will get through this and be happy again, although you will never forget. It is amazing sometimes where you find the strength, but you do.

I am thinking of you and wishing you all the strength you need over the next few weeks and days, and after that too. Remember that grief comes in waves. If you feel a bit better for even a few moments, don't feel bad about it, and if and for times when you feel absolutely desolate again, know too that it will pass. Lots of love. flowers

CyclingFanGirl Thu 26-Apr-18 21:33:12

Hi @39Suzy.

I'm so sorry to read that you are struggling at the moment, but it's normal. I struggled so much in the first few weeks, but it did start to get easier with time. That's not to say I don't think about our son every day and some things set me off crying easily when I connect them to him. In particular I found the cremation to be a surprising turning point, it was very simple, just myself and DH, no service, but strangely comforting.

Please take lots of time for yourself and your DP, do whatever feels right for you, talk about it or don't talk about it (I was definitely a talker, to the right people) and take time off work (I needed 10 weeks).
I found that the experience has affected me in strange and unexpected ways, my concentration span was poor, my ability to make decisions was totally knocked sideways, even simple tasks felt stressful and complicated. When I spoke to a counsellor she helped me to understand that these things were normal after such a traumatic experience and they have also settled with time.

I have been in contact with SANDS who have been really supportive and I would highly recommend speaking to them.

Be kind to yourself, keep posting here if it helps and know that you're not alone, lots of people are thinking of you.
flowers

DaniAlvez Thu 26-Apr-18 21:56:00

I'm so sorry you are going through this awful time, I had a TFMR 9 years ago with my first son as he had bi lateral cystic kidneys and no waters around him. We knew we'd made the right decision as he would never have survived outside of me. These first few months will be very hard indeed. I had counselling privately but couldn't start until about 3 months after J died because I couldn't talk about it all without crying. 9 years on and I have 2 more children and they both know about their big brother. Just last week we showed them the photos of him taken just after he was born. They were completely cool with it and said he looked like my second son.
It's the worst thing that's ever happened to me but the positive thing is that you do get through it and you will be happy again one day. The one thing I will say is that I have always talked about J and used his name. He is part of our family and all my friends and family acknowledge that fact as if they had met and known him. It really matters that he is not forgotten. Sending you strength to get through this x

39Suzy Fri 27-Apr-18 19:10:03

Thanks for the replies. I feel much more composed today and generally a feeling of 'acceptance' rather than anger.

39Suzy Sat 29-Sep-18 15:28:43

Hi, just thought i would update this thread a few months down the line as i hope it will help someone else in this position.

The weeks and months after i gave birth were incredibly hard. I cried every day for about three months.... the smallest thing would tip me over the edge as the realisation of the last few months hit me time and time again. Someone likened it to a parallell universe, particuarly as my due date approached. I ended up going back to work (grudgingly) at the beginning of August, the monday after i should have finished. It was shit.... my Outlook diary fired a hundred and one reminders for antenatal appointments and i was sobbing by 10am. My manager was pretty useless! Collegues struggled to find any words to break the ice and several went out of their way to avoid me completely. But, it got easier and a month in and it felt like i had never been away (even if some collegues STILL havent spoken to me!). Those early days, we didnt want to see or speak to anyone. Noone could understand how we were feeling, and repeating the same answers to the same questions was draining. But, as the days and werks passed, it became soothing to get out, see people and be 'normal'. That first friday night drink with my friend was tough, i burst into floods of tears three times in about two hours! But, we (and our friends and family) soon got used to our new 'normal".

At home, it was hard going as DH struggled to come to terms with the loss after ignoring it for weeks. And with my due date approaching and impending post mortem and funeral growing closer it got tougher. As much as he was trying to support me and put on a brave face, i could see he was hurting. Probably more as he had shut it out so long.

The funeral (at the end of August) was a big turning point. The PM results were imminent but it felt lile a big release to get through this day. The PM results we have had since have confirmed that we made the right decision (i spent many a night racked with guilt that we had made a mistake!). If he had gone to term, he would have suffered a fatal seizure during or soon after birth. I look back now thinking that labpur and the end result was the most amazing thing i have ever done. No it wasnt the outcome we wanted but gradually it is the overwhelming love, not the loss, we are feeling. It gets better....

Today, we have a framed photo sat in our bedroom of our little boy clutching his teddy. I only regret not taking more pictures as it brings me so much comfort.

My due date was surreal.... we both took a day off work to do 'something'. To me it wasnt really that meaningful as we now have a birthday but for DH it was a big deal. We decided on a long country walk and a pub lunch. But in the morning, frustrated and upset by the lack of AF (which i thought had got back to normal the previous month) decided to take a pregnancy test. It was positive (explainedwhy i was 2 days late!!). We cried, shook and were stunned by disbelief. I am now 11.5 weeks pregnant and gradually coming to terms with the fact that we may have a baby to take home with this one.

I just want to say thanks for all the help and hope i can pay it forward one day x

CyclingFanGirl Sun 30-Sep-18 09:14:18

Congratulations @39Suzy flowers that is lovely news.

Thanks for the update. I am currently lying in bed cuddling our new baby, she is 12 weeks old and utterly amazing. The pregnancy was a really anxious time, but it has been so worth it. Wishing you all the very best for you and your family.

flowers

39Suzy Sun 30-Sep-18 09:47:31

Congratulations @cyclingfangirl that is lovely news and thank you 😊

Fatas Sun 30-Sep-18 11:20:15

Thanks for the updates here. I currently going through this. But my baby will only be 13.5 weeks

I don’t think I want to see him/her. He/she won’t be very formed and I’m scared the image will be with me forever. I don’t even know about cremation- will there be enough remains to have any ashes? Or maybe I should just let the hospital cremate and scatter in remembrance garden. So many things to think about.

I’m lucky in that I have an 11 month old, but also feeling unlucky that there may never be a sibling for him.

I’m trying to look on the bright side (is there one). I have a gorgeous baby who is keeping me sane at the moment.

I’m scared about the procedure- I didn’t know it could take up to 18 hours and scared that it might not work so may have to be operated on.

I’m also annoyed with myself, I’m an older mum and I feel like I’ve tempted fate somewhat.

I thought I’d be going back to work this week. It’s not always useful to mope at home and I guess the trauma is not as bad as losing a baby at 20 weeks. Am I being by niave?

39Suzy Sun 30-Sep-18 12:27:12

@fatas i am so sorry you are going through this now. My heart truly goes out to you.

At 13.5 weeks you should be able to have a surgical termination (and be knocked out) rather than go through labour. But if that isnt possible, it shouldnt take 18 hours as there is a big size difference in 13.5 weeks and 23 weeks. BPAS or ARC will be able to give you advice on this.

Have the hospital given you any information about the cremation or burial options? They should do this at the time that you give permission for the termimation with options. I am not too sure about private options for you..... we were advised at 23w 6d that there wouldnt be that much ashes (and we would only scatter them anyway) so decided to go with the hospital option. It was a lovely service and the ashes are scattered in the crem next to the baby memorial garden where we are having a plaque.

I felt very apprehensive about seeing him but ultimately, so glad i did. If you don't want to, you can ask the hospital to take photos for you. It is a personal choice and as the grief starts to lift, it is an image which i treasure.

Don't beat yourself up about being older, that is probably irrelevant. I know the risks increase with age but ultimately, this can and does happen to anyone ❤

It is a time of shock, confusion, anger and the most heartbreaking upset so take some time to be kind to yourself, and if that means a bit of time off work then do it. Sending you lots of love and strength x

Fatas Sun 30-Sep-18 16:50:55

Thanks for your kind words. Yes the hospital called today and gave me more info on what happens with the shared cremation so I’m going to go with that.

I guess I’m so worried that at 13.5 weeks my baby won’t look like a baby, but I’ll ask about the picture- perhaps it could be something I can look at when I feel ready. I’m just not sure seeing it right now will help me in the process.

The surgical is not an option at this many weeks gestation, I think because they have to stretch your cervix surgically and this carries with it a little extra risk. I think I could have requested, but I’m going with the lower risk option. If it fails though, then I have to have surgery so I’m really hoping it’s as straightforward as can be.

39Suzy Sun 30-Sep-18 16:55:54

@fatas i dont think the NHS offer surgical options which may be why they have told you this but speak to BPAS if you don't want to go through a labour (you can get a referral from the NHS). I think they dilate the cervix to perform the procedure but either way it has to dilate so don't let that put you off.

Hope it all goes as well as these things can x

Fatas Sun 30-Sep-18 17:04:32

Thanks, I don’t want to go through the labour, but also don’t ry want surgery as risks are increased with surgery.

So guess I’m stuck with the medical procedure.

hayleyfx Sun 30-Sep-18 17:05:47

Firstly @39Suzy I’m so so sorry for the loss of your little boy, sending you so many hugs. On a brighter note - congratulations on your new pregnancy! That’s brilliant. I hope you have a very smooth, easy and healthy pregnancy, you deserve it. ❤️

@Fatas just want to say I went through the same thing last month. I was 14 weeks exactly when I delivered my baby. We had to have a termination as he was diagnosed with an encephalocele which isn’t compatible with life. On 6th August I delivered him, I’ll briefly tell you how it went -
I took 4 tablets at 11am. By 2pm nothing had happened except a few minor cramps so I had to take another dose. Was feeling frustrated. Took another 4 tablets at 2:30pm. Within 20 minutes I had really bad cramps, I had to take dihydrocodeine & paractemol at this point. The bleeding didn’t start for another hour or so (finally) and by 4:30pm I went to the bathroom, sat on the toilet and I had a strong urge to push and awful cramps like contractions. I don’t want to scare you with this but I did have to push quite hard and I looked down and saw a head first, then arms, then legs. I didn’t expect this at 14 weeks. He looked exactly like a baby - just a smaller version. Then I had to wait to deliver the placenta - it only took about 10 mins though. After that, the pain just disappeared. It was such a relief but so sad too. I held my baby for half an hour and took pictures etc and it helped me however it’s so different for everyone. Do whatever feels right for you. Sorry if it sounds a bit scary and a bit TMI - I’ve had 3 losses now so I’m totally used to talking about it.
I hope it goes as easily as possibly for you and I’m so sorry that you have to go through this. Sending you the best of luck for the future and lots of healing thoughts 💕

Fatas Sun 30-Sep-18 17:06:18

They told me the reason they do t offer it on nhs is because of the increased risk, though if medical doesn’t work they then perform the surgical procedure anyway

Fatas Sun 30-Sep-18 17:10:45

@hayleyfx- no not too much information at all. Thank you so much for sharing with me. Sorry for your loss x

39Suzy Sun 30-Sep-18 20:07:55

@hayleyfx so sorry for your loss. Thanks for your best wishes x

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