TMFR options

[BleakTimes22]

Hello. My husband and I received recent news of an abnormality picked up on the 20 week scan, and confirmed at the Fetal Medicine Unit. Based on the consultants comments at the time pointing to dire probabilities and possible options to consider - including termination - my husband and I researched and debated all weekend. However, on confirming our desire to terminate the pregnancy for not wanting our child to suffer, the hospital have stated that the legalities need to be considered, and said that because they cannot confirm a severe disability is almost certain, they can only rule in favour of a "social termination" rather than "medical termination". What this means is that the hospital will pass us on to a private organisation to continue with the termination - which in itself delays the process and pushes us closer to the 24 week deadline. My problem here is that I am deemed a high risk pregnancy and so would be more comfortable in a hospital environment prepared to deal with any eventuality. Also, I want to deliver and hold our baby rather than go down the surgical or other routes. I have heard nothing but terrible things about Marie Stopes and BPAS who treat TFMR mothers as though they are on a conveyor belt or using this as means of contraception. I am so stressed. Can anyone confirm that they were able to TFMR in a hospital despite perhaps not being classed under Classification E, i.e. an anomaly that will be fatal to the baby or cause severe disability?

*coming

I also tried to contact Harris Birthright @pitchforksandflamethrowers , but couldn't get through. I mentioned them to the hospital who said that unless the evidence comes from within their hospital, it will not make a difference to their decision.

And, of course, the hospital process will take me over the legal deadline

@BleakTimes22 ok so I will level with you.

I had a surgical termination (not as late as you but not early) due to the baby passing utero and also a still born. Both were awfully awfully hard in their own way. Medically speaking I healed better from the surgical (much much faster). I know this isn't what you want but I wanted to try and offer some consolation.

I will caveat this with I went on to have two lovely perfect babies (one was poorly on birth but that was nothing to do with the above.)

It will be hard regardless because actually your grieving your baby and how you give birth should be one of the things you can control in such a awful circumstance.

The hospital have to offer you another way to deliver. Are there any other local hospitals ? Ideally larger ones. I know of someone in similar situation and she chose to have a c section so you have been so terribly unlucky. Get in touch with pals and get them to put some pressure on the referral.

So I'm going to give you some advice (I realise you haven't asked for this but it helped me process things) this situation - it's like being dumped into the sea. And you don't know how to swim. Some days you will feel like your drowning and others you will just treat water. The sea will change from calm to stormy and it's not about escaping the sea but learning how to swim. I know you feel alone but there's so many of us in this horrible shitty boat and we are all cheering you on for each day you keep swimming. The grief doesn't disappear but it gets smaller and more manageable. And one day maybe you will also be able to help another cope with the seas of grief your currently swimming in.

Another recommendation-Tommys baby loss charity (they are also baby loss private group on fb that offered me a lot of support and love . There are so many women who have been in your situation and had to make the same heartbreaking choice you have. They also have a helpline manned by mws who know a lot about the subject at hand.

I'm sending you a massive hug. One day each day at a time.

Your message @pitchforksandflamethrowers is so powerfully worded that I burst into tears once again. I loved it so much I read it to my husband who is silently processing (which he does when he finds something worth thinking about). I have indeed reached out to Tommy's too and will do so again tomorrow. In particular, ARC and BPAS have been amazing. They held my hand as I called each in turn all day long with questions, suggestions and when I needed someone to say, "hang in there, we're not at the deadline yet." Also, thank you so much for addressing the surgical option - and indeed my fear for what it will mean for future conception. Admittedly, I have found very little on those who have had to do this via that route at my gestation which makes me feel almost like the guinea pig here. I also realise that all positive stats refer to first trimester.

I do hope you're right and the hospital offers me an alternative. I will reach out to PALS as you're also right that pressure needs to be applied. Not having a choice on this is unacceptable and beyond what someone should be asked to endure.

I will hold your words close tonight to keep giving me comfort. What a great soul you are.

@BleakTimes22 ah you see I had someone help me so it only seems fair - I also don't want you feeling alone although I'm sorry you burst into tears again!! I think I spent months swinging from tears to anger so it's totally normal.

Another tip you and you'd dp will grieve at different timelines and grief will be displayed via Different emotions. None of it's wrong and try very hard to be kind to yourselves and each other. My example is not being a very angry person by nature I was shocked at the boiling rage I was assaulted with after the loss of my son. My DH at the time went from chatty to silent all the time. Made for some crackers of arguments I can assure you. Grief has many faces - keep talking. Don't stop talking.

Keep treading that water and don't forget rainbows appear at the most unlikely times. Surgical seems so bloody scary but honestly in many ways it was easier and in others so much harder.

Had 0 complications after and shortly conceived after so pls don't panic. That said push for whatever you need to stay sane.

Please keep us updated lovely 💐💐💐💐

Thank you so much @pitchforksandflamethrowers. My husband definitely becomes a lot more quiet when he is stressed, upset...and in this case, when he will be grieving. I, on the other hand, go from a chatterbox to snappy. Indeed, we will keep each other in mind, and continue to navigate those waters. Thankfully we've known each other for 15 years and rode some big, scary waves, so there is little of each other we haven't seen!

I am so grateful for you and your thoughtful manner. I will be sure to keep all here updated. You have made me feel so much better. Thank you.

I would advise asking your local unit to refer you to a different fetal medicine unit who would be willing to do the TOP. Not sure where in the country you are but there are several in London, Kings, George’s etc

@BleakTimes22 thinking of you op ! If your feeling mentally strong enough please update us 💐💐💐💐💐

Don't give up and keep treading that water.

Hi @JackiePaper . Indeed! I wrote a letter detailing all to the hospital - their dismissal of my case including questionable legal barriers and their lack of contact, their refusal to look after me should they not be involved in the feticide which legally they cannot do, and what they should be doing if it is personal conviction that prevents them assisting here, etc. I think they realised I was willing to take this as far and wide as I needed to given they responded almost immediately, cc'ing a number of officials in to say they would do everything in their power to help. Within 10 minutes they had found another NHS trust who would give the injection and they agreed to manage the medical induction. Funny, because I felt a sense of relief and dread all at once. I had been fighting so hard for such a dreadful experience, and the realisation that I couldn't even celebrate the moment as a result hit me like a ton of bricks. I now find myself weeping at what I am about to sign on the dotted line to do. I am authorising the killing of my child to put it bluntly. I know this is to save my child pain and suffering, endless surgeries in life and misery I'm sure, but in this moment I can't help but feel some kind of annoyance, sadness, that it is me who has been given this power to say whether the child should live or die. As awful as it sounds, I wish nature would make me miscarry to spare me being front and centre in the decision. I now dread both the injection to come and the labour. I have had a c-section and so the labour in itself brings other worries besides the excruciating pain, bleeding, placenta not coming out and the like. Has anyone else gone through labour and delivery for a tfmr following a c-section?

Thank you @pitchforksandflamethrowers . I feel drained, but your words have carried me over the last few days.

I can't advise about the labour, but I know exactly what you mean about hoping for a miscarriage.

Being a parent means making tough decisions for the benefit of your children, and this is one of the hardest any parent has to make. You have considered everything and you're putting your baby first and making the right decision for them, even though it's hard for you.

I hope everything is a bit easier for you now - you really don't need people to be working against you. Do ask about bereavement midwives - the ones who supported me were wonderfully supportive. Sands is also good for advice.

Use your time now to think about what you want to happen afterwards. I don't know what's possible at the stage of pregnancy you are at, but bereavement midwives can help with what options you have.

Thank you @123ZYX . I will be sure to ask for bereavement midwives. Of course you are right in all you say here, and I carry this pain so my child doesn't have to.

@BleakTimes22 well it is something, I'm glad the hospital has now stopped adding to your pain and the new trust will treat you with every ounce of kindness.

Only a loving mother could make the horrifying choice you have to make. A piece of advice from someone who desperately nearly didn't hold my baby out of fear. Take all the photos and cuddle as much as you need, likelyhood you will be in a special suite with a cold cot so you can stay as long as you need with your darling baby. You may not be able to look at those photos after but I promise you you will dearly love want to see them one day.
Midwives will take hand and footprints and likely give you a memory box for babies things. One thing I did was by two identical bears give baby one teddy bear and took the other. I like knowing he has the brother bear with him. Balm on a ache that hasn't ever vanished but helps

Re pain and birth - take all the painkillers you require. You don't need to punish yourself for the decision you have made. Don't make a horrific experience even more so without painkillers ok.

When have they got you booked in ?

Thank you @pitchforksandflamethrowers . It is like you can read my mind. I am so torn as to whether to just glimpse the baby or actually hold and cuddle my baby. I feel the latter is the least I can do to acknowledge this life I love but couldn't show in the way I wanted to. It sounds weird to say I am scared to see my child now, but there's the truth. The idea of this little, helpless body, lifeless because of me - not to mention the visual of it all - I don't know if that will help me process and deal with all. I will carry that image with me and surely that will make things all the more unbearable for the foreseeable future....I don't know. I'm so confused with what I feel I want to do now.

I also did think that should the pain be awful, maybe that's what I deserve. I was going to try to bear the pain as much as possible as though by doing so would transfer the pain and suffering my baby would have had to go through onto me in that moment. I realise how mad this all may sound. Maybe grief is making me lose my marbles. Another, "I don't know" moment in my mind.

I love the teddy bear idea. I may have to steal that from you. Thank you.xxx

I get the injection tomorrow, and labour on Thursday

@BleakTimes22 I know it's no comfort but I was the same terrified. Please please don't make yourself suffer more than you need to. This suffering lasts a lifetime, you don't need to go without painkillers to equal things up I promise. You have done the best for your child.

I really couldn't bare to look at my little darling but the Mw gently told me I may regret it if I didn't and thank god I did. Perfect little one, I was so worried he would have looked ill or shown why he was born still but he wasn't.

Please don't be cruel to yourself because fate has dealt you a cruel hand. And just to warn you all things that happen after a normal birth, happen pretty much the same in this case too (night sweats, leaking, bleeding ect) which I found very cruel indeed.

Remember grief has so many faces but all of them built from a place of love ❤️

Also you can do this re tomorrow Thursday.

We are here and you aren't alone 💐💐

Maybe get a book to read to your baby. That way, you can share something with them even if you don't want to hold them.

There's a couple of lovely ones we used - try Wherever you are my love will find you by Nancy Tillman and Baby bedtime by Mem Fox

I also got a two piece necklace and split it, so that I have one half and my DD has the other. We also did the teddy idea.

And think about dressing her, you can get premie sized clothes. I also used a nappy, because it felt wierd not to even though it obviously wasn't needed

With regard to all the post birth stuff - this is absolutely right. However, I was offered a tablet (no idea what) which prevented lactation.

Thank you @pitchforksandflamethrowers . I know you're right. I have this awful guilt/ sadness/anger to deal with and I just don't know how to..but I know you're right.

Thank you @123ZYX , I will check out the book recommendations. I love reading and so this is a great idea.

Tomorrow I may very well find myself here again. This is going to be so painful and only you ladies understand what this whole thing is like. It helps to talk to those who have walked this path before xxx

@BleakTimes22 I felt the same, hated that it was a “choice” I had to make and not just something that was happening to me although I felt grateful to live somewhere that there was choice. I am livid on your behalf how hard you had to fight for that though in the middle of all
this horrible grief. That’s completely outrageous and you just didn’t need it.

This baby is much loved and wanted and you’ve weighed everything up to save them from suffering knowing you’ll carry the pain. That’s a loving act. I’m so sorry you are going through this.

Lovely supportive charity called tfrm mamas.
Thinking of you and sending love

Sorry, tfmr mamas .. it's late!