How do you know when to stop trying?

[LP2020]

As the title suggests really...
Bit of background, I'm 33 and partner is 32. We have DD 4 yrs and have just unfortunately gone through a heartbreaking TFMR due to T21 and other abnormal findings - I was 17 weeks with another DD. Previous to the TFMR, I had a MMC in 2022 at 18 weeks, baby had died at 13+1 and I went to a very dark, lonely and awful place mentally, following a traumatic and complicated medical and emergency surgery management which resulted in a blood transfusion. I swore to myself that I would never ever put myself or my family through another pregnancy, but somehow, after time, felt this deep aching to try again and luckily it happened quickly for us, however ended heartbreakingly almost 2 weeks ago with the TFMR. We also had an early MMC at 8 weeks before our DD was born. So, here I am, very empty, feeling devastated and so sad for the life that could have been. I feel emotionally very unsteady at present and preparing for our DD2 funeral this week and just can't believe the shit luck we have faced. The thing is, I don't feel done. At all. I feel so different now to how I did after the MMC before and I immediately have that deep aching again to try and complete our family. I don't know if it's because physically, I'm not done yet (still bleeding and hormones likely all over the place due to terrible HG and chromosomal abnormalities) - but I can't seem to quieten the voice of possibility and 'what-if' and it's so bloody hard. My partner is adamant that he doesn't want to try again due to the traumas we have faced and I completely understand that and respect that it's his decision as well...but, how do I move forwards from this place? To any others who have experienced similar or just understand the feeling of not being done, what did you do? Did you go on to have healthy, successful pregnancies? Did you find ways to accept that you were done and focus on the positives and eventually, it got easier?

I'm so sorry for the disjointed nature of my post, I'm just feeling a bit buried at the moment and could use some perspective and advice and just a bit of a handhold.

Thank you for reading x

@Pottersciderbar82 Wow! I was reading your story with my heart in my mouth hoping you got your baby and thrilled to hear that you did!

I’m also 42 and we had previously decided to stop when I’m 43. I know that the issue is autoimmune and is treatable, this current pregnancy appears to be just bad luck. I’m terrified about the prospect of a TFMR and the potential for it to be long and drawn out either physically or mentally. Your story has given me some hope though, thank you.

Hello @Fletchasketch, thank you for reaching out and checking-in. I’m so sorry you find yourself in this hard, shitty position, faced with what feels like an impossible choice, whichever way you decide to proceed. I honestly remember writing this post as if it were yesterday and can still feel the huge tears rolling down my cheeks and the unbearable ache which consumed me.

The past year has been such a whirlwind and I am so truly blessed and grateful to share that we welcomed our double rainbow baby in August. We found out I was pregnant on New Years Day and I honestly went into ‘head-down, breath-holding, survival-mode’ for the duration. I spent the entirety of my 36 week pregnancy, not allowing myself to believe it was real or enjoy the experience, as it would just make it all so much harder to accept, should it all go wrong. But, by some miracle, our baby arrived safe and sound and I count my lucky stars every single moment that I didn’t give up and gave everything I could to get him here safe and sound. I had the very best and most amazing care from the bereavement team at the hospital and had the kindest consultant who was as invested in us, our pregnancy, and our family as our own family members were. Between them, they kept us going and were a source of constant positivity that we desperately needed throughout.

I realise how lucky we are and honestly, I have no idea how I found the strength and determination to push forwards, but I will be eternally grateful that I did. Our little daughter will always be a part of our family and never ever forgotten about or replaced by her baby brother. I found baby loss awareness week particularly hard this year and ended up back in that dark hole of all-consuming grief and loneliness, despite having a newborn baby. It was all brought to the surface just how hard and bloody sad our journey has been to complete our family, and how our little girl will always be so important to us and so desperately missed.

Please be kind to yourself and take time to process your feelings and know that whatever happens, you will be okay. Like @Pottersciderbar82has said, there is truly incredible strength and support from a bloody amazing tribe of women on here and we all see you, and are here to support you. Don’t lose hope, the sun will shine again. ❤️ xx

@LP2020 I can't tell you how moved I was to read your post. Not just to hear you're amazing news that you went on to have your lovely baby and the hope it has given me but for making me feel less alone and justified in this heavy, suffocating grief. I have to believe that things will get better and you have helped me believe that they will.

I have done an enormous amount of reading over the weekend, possibly not healthy but one of the things I discovered was that 80% of DS babies will miscarry, and many of them in the second trimester. It made me feel that if I end this pregnancy, it's more a case of not prolonging the agony rather than ending a life. I also watched the Sally Phillips documentary and it didn't change my mind. We have a detailed scan with te screening team this afternoon, and awful as it is I'm hoping that in the absence of some huge mistake, that they will discover some very obvious problems which will make this decision a little easier.

You have brought a little lightness to these darkest of days, thank you so much. Sending much love to you and your little family, all the best. x

@FletchasketchI’m so very sorry that you’re living this waking nightmare and every day feels like an eternity of waiting and hoping and wishing for a different/better outcome. It really is agonising and I hope so much you have good support around you. You’re definitely not alone and your grief is real and heavy and just plain shitty to get through. You have to hold on to hope and the belief that it won’t always be this way and life will feel brighter and lighter again.

I too googled absolutely insane amounts and trawled forums and research papers and watched documentaries (including Sally Phillips) and just begged and prayed to anyone listening to make things better and there to have been a mistake or a mix-up with the bloods in the lab or the scan images belonging to someone else…but unfortunately, it didn’t change my horrible outcome and instead, drove me to the very brink of my sanity. It’s so so hard though and actually, it felt proactive to research as much as I could, at a time when I felt the least in control of my life.

I absolutely remember the feeling of “please let there be more” during the detailed scan before the amniocentesis as it would lessen the blow of the decision we would be making. I couldn’t bring myself to look at the screen and just closed my eyes as tight as I could manage and held my breath to get through. I hope you managed to get through the appointment okay today? I’ve been thinking of you

Please be kind and gentle with yourself during the next few days/weeks and months to come. You will get through and find reasons to smile again. Sending love and strength to you and your family - always here to chat x

Thank you for your lovely message. I can relate so hard to this.

I had my scan today and as expected no soft markers for DS, baby was really hard to see though, but nuchal translucency was around 1.9 mm. I also can't have a CVS test due to the position of the placenta and so amniocentesis in three weeks it is. The thought of a late 2nd trimester termination is beyond horrifying, but there are no other options here. I am fully expecting a negative result, but at the same time torturing myself with the false positives on redit.

In positive news, work have been extremely understanding- said I can take as much time off as I need before or after the test and I am more in love with my partner than ever, he has been wonderful, patient and kind throughout. I need to cling to that while every other part of me feels completely broken.

@Fletchasketchhope you’re doing okay and taking things slowly. Remember, one step at a time. You will find the light and the heaviness of it all will lift, allowing you to breathe again.

The agonising wait was mentally so much harder than I could’ve imagined and looking back, I seriously think I detached myself from reality and just physically moved myself from moment to moment, whilst not actually “being there” whatsoever. It was dark and lonely and hideous. However, it didn’t last forever and nor will it for you.

Stay strong lovely. Reach out as/when you need to xx

@LP2020 thank you so much for your message.The wait is just beyond awful, especially when I know there is so little hope for a positive outcome. At our scan a week ago, I was hoping against hope that it would show something obvious to make the decision easier. On top of that, I've had my bloods back from the combined screening which shows Beta-HCG is actually low rather than high, which has had me in a tailspin as I can't find any examples of this for DS diagnoses. I know I need to stay off Google and focus on doing other things that distract. Long walks seem to help as do cooking elaborate dishes that take hours. I will also take any and all recommendations of uplifting films/triumph over adversity etc. as they do seem to make me feel better for a time.

I have had amazing support from Sally at ARC as well as my good friend who let me snotty cry on her on Saturday night. This is truly the worst time of my life and my heart goes out to anyone who has been through it. I am hoping in time it will change me for the better and make me more patient and compassionate, I am trying to see the inevitable decision as one made in love rather than something negative.

You are so kind to be thinking of me, lovely stranger on the internet- please know that you have given me hope that things will get better and that we will come through this.

A sad, but probably expected update from me. We had the results of the amnio at the end of last week which confirmed Trisomy 21. The hospital had pre-booked me an appointment with BPAS to end the pregnancy on Monday which went as well as it could. I've been signed off work until the NY and have found a great therapist who specialises in baby loss, but nothing even remotely compensates for the crushing grief of missing my baby.

Today I am doing something nobody should ever have to do and arranging the cremation. We weren't expecting to attend and were just planning on scattering the ashes privately. The funeral director has offered an attended cremation which has somewhat thrown me for six. If anyone is happy to share, I'd be interested to hear about what you did to say goodbye to your babies and if there's anything you'd suggest we do. I appreciate everyone is different, but it's so hard to know what to do for the best.

@Fletchasketchso very very sorry to read your updates (apologies for the delay in replying, I didn’t get notification of your messages) - my heart goes out to you during this most painful and heartbreaking time. Although you had mentally prepared yourself for the results/answers/outcome, it’s always earth-shattering when your fears are met with it all becoming reality and something you actually have to go through.

I’m pleased to read that you have good support around you and have been given time and the space to process it all as much as you can and let the waves of grief hit. It’s so cruel that Christmas is around the corner 😔 I personally always find the tail end of the year particularly hard as it really shines a light on the lows and what could/should have been. I hope you find some moments of calm and peace during this time.

We too have gone through the unimaginably hard process of planning a funeral alongside bereavement midwives, funeral directors and the reverend who attended the hospital after our daughter was born to do a blessing and sit with us in the very darkest moments which followed. It’s horrible and hard and so so unfair. There wasn’t a whole lot we had to do, as between the three amazing pillars of support we had, everything was planned for us. We were asked to choose three songs we would like played at the service. This was an extremely hard and emotional decision, but one which allowed us to feel like we had made it as personal as our hearts could allow at the time. We also had two very small floral arrangements made, which stayed with our daughter. The reverend did a reading of a poem which meant a lot to us and we kept the attendees to a minimum, inviting only the bereavement midwives who had been with us every single step of the way throughout the worst moments of our lives. We didn’t want family/friends as it felt like something we had to go into ‘survival-mode’ for and also wanted to keep as much normality and consistency for our 4yr old, which meant close family needed to look after her for us whilst we attended the funeral.
The best piece of advice I was given throughout this whole process (by the amazing bereavement midwife) is ‘you’ll only ever regret the things you didn’t do’. I was so torn as to whether we should collect the ashes or let the crematorium scatter them in the memorial garden. Whether or not we wanted to scatter them or keep them to feel a sense of closeness to our daughter. Do I have a piece of jewellery made, do we sprinkle them with a potted plant. So in the end, we collected her ashes and have them at home with us, tucked away with her memory box, aching arms bear and one day, we’ll face the enormity of it all again and hopefully feel a little stronger and have more clarity on what exactly we would like to do with them, if anything. There’s really no right or wrong in this situation, you just have to let yourself feel it all and hold on tight to get yourself through.

Just keep reminding yourself that every decision you have made and will make is coming from a place of love. There is light at the end of this tunnel and you will be happy again, I promise. Just allow yourself time to breathe and grieve.

You’ve got this.

Sending love and strength to you x

@LP2020 thank you for your lovely message. I hadn't felt up to responding until now, but wanted to thank you for your words as they made it easier to get through the cremation. Initially we weren't going to go as my partner thought it would be too hard, but we did at the last minute, and I'm so glad we did, though it was tremendously hard and so so sad, I was pleased we were able to say a proper goodbye to our daughter.

Christmas will feel a bit different this year; l am acutely aware that we should be almost 20 weeks and supposed to be visiting the family with happy news. We will end the year quietly, honouring our baby and holding a little bit of hope in our hearts for next year.

Lots of love to all x