TFMR at 21 weeks - scared and looking for help

[GM2202]

After what feels like a long and very difficult pregnancy, we were told yesterday at the anomaly scan that there were major concerns with the baby’s brain. We decided to terminate because we were extremely confident this was the right choice for us, our older son and our baby who would have faced no real quality of life. We had the injection yesterday afternoon to stop the heartbeat, and just before we did Prof Nicolaides walked into the room, took a long at our tests and told us ‘it’s the right choice’ - that was extremely comforting and so I am not questioning what we have chosen.

However we are going into hospital tomorrow for a medical termination and I’m terrified of what to expect. I was told it might take up to 48h, that the placenta might be retained, that I might not be able not to see the pregnancy passing (both my husband and I are certain we don’t want to see or hold the baby - I realise this is a very personal choice where many will feel differently). The prospect of bleeding for days or weeks and maybe needing more procedures is terrifying me right now. I’d love to hear some stories of women who have gone through this and come out the other side. I had a missed miscarriage before and I know time heals even though you never forget. But at the moment I can’t imagine ever feeling ok again.

I'm sorry to read you are going through this. My story is here. www.mumsnet.com/talk/antenatal_tests_choices/4542751-our-edwards-story

The last few sections may be useful to you. We did see the baby so there is a difference there. When my Midwife also implied I was doing the right thing I found it a comfort. I think we do find ourselves needing that validation with such a horrid decision x

Thank you for sharing your story @Missingmydarling . I’m really sorry for your loss.

I would have ideally preferred the surgical management but there was a 10 day wait for that and I felt I just couldn’t handle it. But now I’m having doubts on my ability to cope with the medical termination.

i believe it hasn’t been that long for you but can I ask you how you are doing now?

I'm so much better than I was in the first few days after I delivered him. I still cry at some point in the day every day. I look at the photos of him often and they comfort me. He was cremated yesterday and I guess I'm glad I don't have to worry about it happening anymore but it was a hard day. I'm only 2.5 weeks on but can certainly see it gets easier and there is light at the end of the tunnel, particularly when you already have a child, in my experience. I am thinking of you x

I'm so sorry @GM2202

I had a TFMR at almost 24 weeks in 2019 as our first DS (our first child) had hugely life-limiting brain anomalies as well.

The fetal medicine consultant strongly recommended a medical, not surgical, termination. DH and I were given the bereavement room (does your hospital have one, they should offer this to you if they do) away from the delivery suite. I had two tablets inserted vaginally on arrival in the morning. After lunch contractions started and he arrived at almost 8pm, delivered by an absolute angel of a midwife - I had an injection of diamorphine which helped so much. No retained placenta, no excessive bleeding (although I did bleed for approximately four weeks afterwards) and we went home at 9am the following day - no pressure on us to leave, but we wanted to go.

We chose not to see him as well and declined photos, as we wanted to remember him happily rolling about on scans and not after he had passed. We made our own private funeral arrangements.

I felt that things would never be OK again - I was a complete shell of a person for a while, not helped by the fact that TFMR is such an isolating experience - not a miscarriage, not a stillbirth, but a choice of sorts - and I found a lot of people don't understand how fierce a love a Mum can have for a disabled baby that she has chosen to say goodbye to. But whilst I can and never will forget my son and I still feel wobbly around the time we lost him and his birth anniversary, things did get better. Separately, it took over a year to conceive DS2 and it was a horrendously anxious pregnancy but he is one now and such a joy.

I found Jane and Sally at ARC charity helpful - I never used their forums but I did call them and it was amazing to speak to two women who were unfailingly kind, non-judgmental and seemed to completely understand. They both said that in their experience families do heal whether or not they go on to have another child or children. They also have some information about the procedure and beyond which they can email / post if you request it.

I hope tomorrow is as physically straightforward as mine was and that you will be treated with the utmost care and compassion. I will be thinking of you and your family

 for you as well, @Missingmydarling.

Thank you @Missingmydarling , even just knowing that in a couple of weeks I won’t feel as devastated is a huge help. I hope you continue to heal. X

@tortiecat it’s such a good point about wanting to remember your baby from the scans and not after delivery. I think that reinforces my decision. Unfortunately our hospital doesn’t have a separate suite for us but they told us we will be as isolated as possible. I so much hope that the physical side will be as straightforward as it was for you. I’m 39 and this was such a difficult, horrible pregnancy (I suffered from extreme sickness until fairly recently among other things) that right now I cannot imagine wanting to try again. After the miscarriage in 2019, two years of pandemic and now this I feel I just want to move on with my life and enjoy what we have. But I know the way I feel today is not necessarily indicative of much.

everyone in the hospital has been thoroughly supportive of our choice and I hope we will get the same good care tomorrow too.

I haven't been through a TFMR but just wanted to send my best wishes and handholds. I think to put yourself through so much hurt to protect your baby from pain and suffering is one of the kindest and most selfless things someone can do. I hope you are well looked after and supported and see brighter days again in the future

I had a TFMR at 26 weeks, 9 weeks ago. My daughter Kara's birth was fairly straightforward. I was induced at 1130, and gave birth to her at 2247. No birth injuries and I passed the placenta in one go and then bled for 2 weeks after the birth but not heavily. Then had 4 weeks and my first period. We have just restarted IVF today and I've had the first injection to prepare me for a frozen embryo transfer. Kara was her first and I'm desperate to bring a healthy child home. But it's not been an easy decision to throw ourselves back down that path. I had a difficult pregnancy in terms of sickness and heartburn even before Kara's diagnosis.
However other than oesophagitis I have recovered very very quickly after the birth. I'm swimming, walking and doing yoga now.
We did chose to see and hold Kara and have pictures but that's such a personal choice and there's no right or wrong.
The Arc helpline is wonderful and I've been on the forum and also find I feel less isolated from being on there.
The first few days/weeks can be dark. I felt awful leaving the hospital without Kara and I wanted to die in the run up to her funeral. I would force myself up and get showered and dressed every morning because I had to keep moving. Now I have good moments and moments where I cry for everything I've lost. I don't regret the decision to let Kara go but I hate that I ever had to make it.
The only advice I can really give is when the dark days hit, hold on, because they pass and it will get better and easier, even when that feels impossible. Look for small things that bring you comfort. I went for so many walks and listened to podcasts. Worst girl gang ever and time to talk TFMR were my initial go to ones so I didn't feel as isolated although you obviously don't have to listen to baby loss ones. I also started acupuncture and now reflexology. I've found the holistic side of things helpful.
Talk whenever you need to, whether that's to friends, family or online. You will find a way forward. Feel free to PM me if you'd like.
I hope everything goes smoothly tomorrow.

@showmethegin Thank you so much for your kind message, your words meant a lot.

@Kitkat247 thank you for sharing your story. I’m so sorry you had to live through this experience. So much good advice in your message about how to recover. I’m really petrified of the process now so I just want to get through that. I just had a call from the bereavment midwife who was absolutely wonderful and told me she will be there for me for however long it takes, which was very comforting. I wish you the very best of luck for your IVF journey x

Just wanted to update here for anyone who finds this.

We were called to go into hospital just before 11 yesterday. They had a fairly isolated room set aside for us which was ready when we arrived. We had a dedicated midwife who was amazing - everyone we saw (obgyn, anaesthesiologist, other midwives) was very kind and compassionate.

I was given the vaginal tablets around 1.30pm and contractions started almost straight away. I needed gas and air quite quickly after that. At 4.30pm I was given the first oral dose of tablets and things escalated quickly from there - the pain was quite bad, I’d say comparable to my son’s labour. I asked for and was given morphine but it was too late to make a difference. Our baby was born around 6pm. The placenta came quickly after, but I’d also had an injection to accelerate it.

We chose not to see the baby as I was so distraught but we knew from the bereavment midwife there would be an option to do so later, too. We were told with great kindness and empathy how they’d look after the baby for the next few days.

Once the baby was born I had no pain at all. I’ve been bleeding since then, a bit like a very heavy period, but painless. I was given a pill to stop my milk coming in, and offered painkillers but didn’t ever need them after the birth.

We were moved to another private room for the night and were discharged around 11.30am today once I’d been given my anti D injection and they were satisfied I was doing ok.

I was blown away by everyone’s kindness, compassion and empathy. I don’t think I’ll change my mind about seeing the baby but I might ask for a memory box.

I found it a bit difficult to be in a labour and then post-natal ward, but that would be my only complaint about the procedure itself.

I feel relieved the physical part is over but my feelings are all over the place. It felt so wrong to give birth and leave the hospital without a baby. Rationally I know we made the right choice but in my heart I feel waves of guilt and throughout labour I kept apologising to the baby and to my husband.

I wouldn’t wish this experience to my worst enemy. But I am thankful to live in a country that gave me the choice to prioritise the baby’s quality of life and to have the wonderful NHS to see me through it. It will certainly be a long road ahead.

Such a difficult thing to do. Well done for getting through it. You have nothing to apologise for. I'm sure your husband is very proud of your bravey and strength x💐

Thank you @Missingmydarling 🙏🏼

my husband was so strong and supportive throughout and rationally I know there is nothing I could have done differently but it’s just so hard not to feel like I failed this baby somehow. I know there is no scientific fact to justify this... Hopefully at some point my heart will catch up with my head…

@GM2202 I am 6 weeks on from a surgical TFMR at 17 weeks and firstly just wanted to say well done on your bravery getting through the physical part - I also didn't want to see my baby and I think coping with a medical termination would have made things even harder so you have been so brave.

I just wanted to send a message of support and to say that time really is a healer, I also spent a long time replaying my pregnancy and finding new ways to blame myself - alcohol I had at christmas, the factwe painted the house, the Covid booster, to name a few. Thankfully this has subsided now and I accept that it was just terribly bad luck and even feel ready to start trying again.

Just be kind to yourself and take each day as it comes, some days you might feel like you can't cope and if you're like me other days it all feels like a dream. We will get there and whatever you choose about trying again there will be brighter days ahead 🙏

You did so well to get through the day itself and leaving the hospital is so difficult. I remember shuffling out with a memory box instead of my baby and I could have howled.
Calipoppy is right, time is a healer and the bad moments get less.
When I first got home I had to be busy. I couldn't sit and watch TV by myself. If everyone I knew was at work then I had to be doings something. But then I felt guilty that I was busy, that I was out after everything that had happened, but I needed it to cope. Now though I can sit and read or watch something.
The best piece advice of advice I got was listen to what you need. If that's lying on the sofa do that, if you have to get out the house then off you go. We all come to terms and face our grief in different ways, there's no right or wrong.
I sometimes wonder whether I did something but I know deep down I didn't. Kara's chromosomes just didn't duplicate the way they should have right at the very start. But again those feelings vary day to day.
Also let yourself cry when you need to, don't hold it back.

Thank you @calipoppy and @Kitkat247 - being able to talk about this with someone who has had a similar experience and receive so much support makes such a difference. I had a call from the bereavement midwife today and she basically said so long as I’m eating, drinking water and sleeping well enough to be ok, that’s the only goal for now. It was a good reminder I can’t have unrealistic expectations of myself. Grief and trauma are just so unpredictable, it’s really hard to tell how I’m going to feel from one hour to the next.

I have no idea how to start a new thread so I’m hoping it’s okay to post here….
im due to have a TFMR next week. Our baby has a rare progressive heart condition, we have been told if it stays as it is now he has a chance of a relatively normal life… that is with multiple heart surgery’s before 16 and then every 10-20 years each with there own risks, but in between the surgeries he could live a normal ish life definitely with limitation. But if it gets worse they have no idea what that could mean they wouldn’t know till it happen. He has about a 1in5 chance of dying anyway. And that’s it it doesn’t get worse.

the thing I’m struggling with is there is a chance and all these ifs… but I don’t think want to put him through that risk or my family I have a 14 month old daughter I have to think about aswell but I feel like a monster 😭😭😭

can anyone relate or help in anyway

Hi @SAHX
I had a tfmr in March. Our daughter had a heart condition that was treatable but not fixable. She'd have needed life long surgery although unlike your little boy it wasn't degenerative and she had a 90% chance of survival. Because of that we were ready to go through with the pregnancy, then we discovered she had a chromosome deletion and that had caused her heart defect. This deletion completely changed her prognosis and her quality of life. But it was technically a grey area diagnosis as she would be born alive and they had no idea how long she would live and what her daily life would be like.
She was our first baby and conceived through IVF, I had never pictured being in the position where I would end my pregnancy, but I didn't want to see her suffer.
You have your little girl to consider alongside your baby, what her life will look like with a sibling who is so unwell.
There is no right or wrong answer, you are absolutely not a monster if you have a TFMR. You're a mum who loves their baby no matter what. It is tempting to think of the what if it's the best case scenario but it's still a very hard life.
I sometimes still have a what if moment but then I remind myself if she was still alive we'd likely be miles and miles away from home in a specialist hospital and that was if she survived that long. Bravery isn't just going ahead no matter what, it's making a considered decision no matter how hard and both outcomes are heartbreakingly hard.
I would recommend ARC, they have a phoneline open during the week for advice and support and they helped me through my darkest moments as we waited for results and in the immediate aftermath.
Sending you lots of love. Take care of yourself.

@Kitkat247 I’m so sorry for the loss of your little girl, what we go through is just so cruel and sad.
thank you so much for your response it gave me a lot of comfort. We have a horrible road ahead of us but I know I can get through it with the support from the kind people like you around me xxx

@SAHX you will get through this. It is incredibly hard to come to terms with the cruelty and unfairness of it all but it does get easier. I'm now 7 months on and although there are days that are difficult and I will always miss my little girl and what should have been, but I have accepted what happened and I don't have any regrets. I feel guilty but again that is lessening.
When I saw and held my little girl I realised that I'd made the right choice. That I couldn't have watched her suffer.
When you have your baby it is completely up to you whether you see or hold them. There isn't a right or wrong. Remember my baby will also come and take photos of them if you would like them to and this is something that the hospital should be able to arrange with them.
The first few weeks are dark but hold on, it does get easier.