This last 3 weeks have been awful. We discovered at our 12 week scan that our baby had a large amount of fluid on the back of the neck, a clear indicator of a problem. We were supposed to have the CVS test to confirm what the issue with but that was not able to go ahead due to difficulties accessing the placenta.
We had an advanced NIPT and the results came back for Edwards Syndrome. A life limiting condition where babies will most likely pass away in the womb, if they even make it to birth most will pass away before their first birthday and suffer inimaginably before that.
A further scan showed that the fluid had increased to 9mm and there was swelling around the baby.
We have now gone through the process of saying goodbye to our much wanted baby after a 2 and a half year journey to get to this place.
I don't know how to move on or forward. I know I need time to grieve but don't know how to do that either. Sometimes I think the grief has got stuck too.
I have read stories like this on here in the past and always felt such sympathy and sadness when I've seen them. For anyone who has been through this gosh it is the most heartbreaking situation one could go through.
I have always found this forum a great place of support and kindness which is why I am sharing my story.
Xx
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Skittles11
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Oh Skittles, I'm so so sorry to read this. How utterly devastating for you and your partner.Life can be so cruel - I really hope that you manage to find a way forwards through this pain.
(If it offers any hope a close friend had to terminate an IVF AA graded blastocyst baby due to Edwards - around 6 months later she fell pregnant naturally and had a healthy baby)
Thank you for sharing I didn’t have the courage to do this.I understand and feel your pain as this is also mine for my Down syndrome pregnancy that had to end.
I’m sorry to hear you are going through this. It is a dark and awful place to be - and I know it all too well. We had a questionable 12 week scan, mixed results, multiple (wrong) diagnoses and no answers. Our daughter died at 20 weeks. I can only offer some hope in that things will eventually get a little bit easier and it will hurt a little bit less. There will be good days and bad. But you will get through it. Take time to grieve however you need to and be kind to yourself.
I’m so so sorry for your loss. Can’t imagine what you have been through and how heartbroken you and your partner are. Sending you lots of love and strength 😘xx
I am so, so sorry, sweetie. I can only imagine your devastation and heartache.
There is no rush to grieve and it might all feel too raw right now to let it out, but you'll know when it's the right time. If it continues to feel stuck, you might consider speaking with a counsellor to help start the process.
I am so sorry to read of your devastating loss 💔 life can be so cruel. Take your time to grieve and heal… you won’t feel like it right now but you’ve a strength in you that will guide you forward. Take it each step at a time. Sending you both so much love and support from afar xxx
I'm so very sorry it is an unimaginable sense of loss 😭 Although different circumstances to yourself I lost my daughter Amelia at 20 weeks pregnant last November we never found the cause of death it forever haunts me. A year on and still heartbroken still angry she died when we loved so much still shocked we lost her at such a late point where we thought we were safe. Since losing her we had 2 early losses ( nothing compared to her) and I'm now 27 weeks pregnant but still very frightened and taking it one day at a time. We were very lucky to have our daughter Francesca ( who took us 7 years to conceive 3 surgeries for my endo and a early loss before her) who we had to keep going forwards for and that is what we believe Amelia would've wanted us to do. In the early days my GP prescribed me diazepam and anti depressants to help me and also called a few times a week to see if I was ok as could be. I was extremely lucky to have such good medical support which I think made such a difference. A midwife after my scan had also had a loss at 20 weeks herself said to me "it's a very long and difficult road ahead of you but eventually this will get a bit easier" I didn't believe her- but somehow I have learned to live with the grief and have a life too, I can smile and laugh now which I never thought I'd do ever again. Although there is darkness there is also light and happiness. There are still moments where I really miss Amelia and I think I always will. Our hospital chaplain who helped us organise a funeral service for Amelia was such a lovely man and he also lost a baby at 20 weeks 20 years ago and said if his house was on fire he would go to get that photograph of that baby. I think that demonstrates that you never forget that baby you lost. Always in your heart ❤️ You will never forget this special baby that has grown angel 😇 wings with time this will become more bearable. Get as much support as you need to get you through the early dark days. I am thinking of you and so sorry you are going this dreadful loss Xx
Thank you for sharing this with me, I'm glad you had some much deserved support during such a heartbreaking time. It is something nobody should have to go through xx
Oh lovely, I am so sorry to hear about this for you. I too lost my little girl Ellie at 21 weeks to Edwards, we had to make the choice of a termination and it was absolutely heart-breaking, we didnt do the tests at 12 weeks as we thought we could cope with whatever came about but you have done the right thing, babys with Edwards dont tend to survive so although it was a huge difficult decision you have done the best for them in the long run although it may not feel like that just yet.I am now 12 weeks pregnant through IVF with a PGS tested embryo, still very early stages and still very anxious about the whole thing but know Ellie is there everyday willing us on and supporting us through.
Please take time off from work if you can (get the doctor to sign you off if needed) and take the time to grieve in whatever way you feel you need, it wont feel like it now but it will get easier, like some of the other ladies have said you will remember your baby everyday and miss them but it will get easier as you get stronger, but that time is not yet. Sending you lots of love and care at this awful, awful time and hope you can continue to reach out if needed xxx
Thank you for sharing your experience with me and for the reassuring words. It can feel very isolating as it seems very rare so I appreciate you reaching out. I wish you so much luck for your current pregnancy, totally understand the anxiety as I would be the exact same but dearly hope all is well for you xx
I am so sorry to read this. I had 2 miscarriages now, it’s never easy! Sending you love and strength at this difficult time. PM me if you feel like talking x
I am so so sorry for your loss. Being faced with such a devastating and heartbreaking decision and having to say goodbye to your baby, especially after already having been through such a difficult journey in order to get to this point, just seems so utterly cruel and unfair lovely. I’m so sorry that you are going through this. Thinking of you and sending so much love ❤️ x
I'm so so sorry to read this update. It's one of those we all dread. I haven't been where you are but I can only imagine how devastated you all are. Sending you so much love. I'm sure this precious baby will be in your hearts always 💚 Praying that each day somehow gets a little bit more bearable xx
Dear Skittles, I'm so so sorry to hear this. You have been through so much. Thank you for sharing and helping others through the pain. Sending you lots of love xxx
Skittles my heart absolutely breaks reading this. As you know, I’ve recently suffered loss too so believe me I really do feel what you are going through and I can sympathise with every emotion and the sadness and emptiness in your words.
It’s been just over 3 weeks since we lost our baby boy.
The first 2 weeks were the darkest and most painful time that I’ve ever faced. There is absolutely no pain like it. During that time, I cried alot and took time to do nothing and try and process what happened. My husband encouraged me out on walks but mostly I stayed in the house.
As the days go by, the darkest does start to lift ever so slightly. The pain is still there and at times it comes over you and your whole body aches, but some how you manage to eventually get up every day.
I went back to work after 2 weeks. I know that’s not the decision everybody makes, but I needed to distract my mind.
I am also starting counselling to help me navigate the road ahead. I’ve just had my first session and I think it will be useful. It reminded me of the enormity of what we’ve been through and how I need to take time to process and show myself the same compassion I show to others. Maybe in time counselling could help you too?
Ive also found some Instagram accounts of similar stories which have helped me feel less alone. They are: @ivf_for_baby_lovell @mainstreammiscarriage @breathingafterloss
I’ve also joined the Sands forum. Worth taking a look.
Please do send me a message if you want to chat. I really mean that.
Thank you for your lovely words. I am so sad for you also having gone through so much recently too. It is helpful to learn about your experience and some of the practical things you have found useful. I am glad that you are finding the counselling useful and I too am having sessions. It is very painful to endure such experiences xx
No woman should ever have to go through this and I am very sorry for what you are going through. I have been through it (look up my last post) so all I can say is sorry. Even I will not truly understand as I wouldn't have had the same dreams and future planned out as you would have for your little one.
Take care of yourself (and protect yourself) - you would be amazed about how affected you will be about "well intended comments" :(.
Expect to grieve very differently from your partner as no matter how kind he is etc he will never know the feeling to not have your baby inside you. It is a very lonely journey but try and join some support groups. Tommy's, Sands and ARC are very good. arc-uk.org/about-arc
You don't go into details and I don't want to assume, but if you had a TFMR, there are some good support groups out there. I am in one on the babycentre app which has been very helpful.
If possible, I would recommend therapy. Joint and/ or solo as you feel fit.
Be gracious with yourself, my sleeping pattern only went back to normal two months later. I lived in a zombie state for a long time.
Take up something that will not be mentally draining but serves as a distraction and means you are leaving the house etc.
Some women go back to work shortly after but I found for myself taking time off was more beneficial. I was off for 3 months.
We lost our son at 16 weeks. I delivered him so I had to deal with postpartum as well as grief so there is the physical side as well which is where the support groups are handy. Grieving is a process and it will take time, I am still on that journey. You sadly don't forget ... You just learn to live with the loss.
I am here if you ever want to chat or want more info ❤️
Hi, Thank you so much for reaching out. I took a look at your post, it is awful and indescribable the pain that you too have gone through. I really appreciate the advice you have shared in relation to support groups, forums, work and distractions. I know there is no right or wrong way to work your way through the grief but it is really useful to hear from those who have been in very similar situations. Today has been a very tough day and indeed mentally draining xx
It will be my dear. It is a long journey if I have to be honest.
Take pride in just getting through the day.
For me just getting out of bed, showering and then getting straight back into bed was an achievement. This was my routine for two weeks before I started pottering round the house etc.
I had already come off social media during IVF, I had one account that I used on Instagram to access TFMR pages etc. I blocked everything else out.
I couldnt even speak to people on the phone for a month. I texted and even then only to three people.
Your body has been through it physically as well as mentally and emotionally. And to top it off it is also the source of your trauma. Be gracious with yourself. The added layer of the trouble you went through to get pregnant also makes it feel that you were pregnant even longer than the term you carried.
My routine was naps, walks & therapy and an insane amount of trashy TV. I even took some time off this site. I only came back on about three weeks ago.
Please please please be kind to yourself..at this moment you have to be quite selfish and think of yourself. I used to tell my mother I was a hot shower away from descending into madness.
My offer was genuine, feel free to reach out to me if you ever need to. Also the support groups are really good, there is a lot of comfort from speaking to people who have been through it. It's sad that groups like that have to exist in the first place, but they really are a godsend.
I'm so very sorry for your loss. Tommy's run a baby loss support group you can sign up to where others will have gone through what you have gone through and perhaps it may help for you to post on that group and hear from others who have been through the same thing xx
I’m so so sorry for your loss and what you’re going through. I’m sending so many hugs to you and a note to say take care of yourself first. The process will take some time but take that time for you and your family. I’m ever so sorry for you xx
This is just devastating news to read & I am so sorry for your loss 😢 I will never understand how life can be so cruel when you have so much love to give. Sending lots of love & hugs to you. ❤️xx
So sorry to hear this, I can’t even imagine what you’re going through. Look after yourselves and our thoughts are with you. Sending you lots of love xx
Oh, lovely. I am so so so so sorry for your loss. This is devastating and heartbreaking. I can understand how you feel because although under different circumstances, I lost a baby boy at 17+5 weeks and had 4 other miscarriages (although none of them as traumatic as losing my baby boy). Infertility is such a difficult journey and to get to this point and have this devastating news is unbearable xxx I am so sorry for everything you are going through xx
My advice would be to be kind to yourself and to take everyday at a time. People grieve in different ways and it takes time. Do whatever you feel is the right thing for you. Think of yourself and put yourself first. Cry if you have to cry, talk about what happened if that makes you feel better, surround yourself by the people who love you (if that is what you want to do, you may want to spend some time on your own) and just take a day at a time. It has been two and a half years since we lost our baby boy and I can tell you it gets a bit easier with time (when people told us this after our loss we couldn't believe it), but I still think of my little boy every single day and he will always be in our hearts. There will be better days than others, but hopefully with time, it will get a bit easier for you too.
I am here if you need me and please feel free to PM me if you want to talk or ask me any questions.
I really appreciate your reply and kind words and helpful advice. It is useful to read of how others have coped with similar circumstances and survived the most difficult of times despite heartbreaking memories. Thank you xx
I’m so sorry 😞 my heart goes out to you. I had an MC at 12+1 right before my scan was due. It was a natural pregnancy at the time and we’d also been trying and through ivf for 2 years at this point and I was awaiting surgery for polyps. I know how you feel, you made plans you had hopes and now they are all dashed and you can’t quite understand how you move forwards when you feel like you’re going backwards. This happened two days before my big 40th birthday shrouded in covid lockdown but I was able to get 6 people outside a pub for it. And I was kind of glad for it. Some knew some didn’t and I just allowed myself to get drunk (which didn’t take much since I’d been abstaining). My boyfriend took me away for my birthday but I wasn’t myself, but that’s okay. It’s okay not to be yourself, it’s okay to feel sad and like you don’t belong for a while. It will get easier. I know you have the reminder of the 2 weeks bleed, isn’t nature kind 🙄 but after that subsides and your periods return you’ll start to feel more you. It’s okay to not understand how you feel. Just let yourself sit in it for a while. But there did come a point where I said that’s that now, time to move on. Suffice to say my polyps were removed and I went back to ivf and transferred my first frozen bean. It ended in failure, but here I am exactly where I was last year, pregnant with my 2nd frozen bean and the 12 week scan was all good. ❤️❤️❤️❤️❤️
Thank you for your words and sharing your experience with me. It is very hard to sit with the grief and I most definitely am not myself but as you say that is okay even though it feels very difficult. I wish you all the best with your current pregnancy after all you have been though xx
At some point you’ll feel more normal, just allow yourself all the time it takes. I wanted to share so that you can see the positive that can come in the end. Thank you for your well wishes and do be kind to yourself xxx
This is so sad. I am heart broken reading this. I pray that the God Lord will console you for him alone can. I also pray for double portion for you in your next one which will be free from any drama. I wish you all the best. xx
Words cannot express my sadness to hear this. Seek grief counselling for you and your partner to get a coping mechanism in place. God bless you sweetheart xx
Oh no. I'm so so sorry to hear this and feel heartbroken for you. I hope you are able to take the time you need to rest and grieve, and that you have someone looking after you. 🧡🧡🧡🧡
I am so sorry, your situation is heartbreaking, and is so unfair. I hope you get the support you need to process and grieve.
I will share my story, in the hopes it will help you feel less alone.
My husband and I got pregnant easily with what ended as a missed miscarriage at 10 weeks. Then got pregnant again easily, but our daughter was stillborn at 37 weeks, because of a poor placenta. Today is actually her birthday, she would have been 4 today. It is hard because it is so close to Thanksgiving, and family is usually around and don't acknowledge the day. I went into the hospital to be induced with her on Thanksgiving, knowing she had already passed.
We started trying again right away but after a year we did IUI and got pregnant on the second round, unfortunately this baby boy had T21, and we ended the pregnancy at 16 weeks. I remember the CVS and crying my eyes out. He was supposed to be our rainbow baby after what was also supposed to have been our rainbow baby. It was 2 weeks of hell, finding out the NIPT results to termination. Today, the only people that know are my family, and close friends, my husband's family don't know. I want people to know he existed, but am afraid of what they will think, of their judgement.
Both the stillbirth and termination were absolutely gut-wrenching and so unfair, not to mention secondary infertility being the icing on the cake.
After the termination we immediately did IVF and were lucky enough to get pregnant right away. Since this baby was born, we have done 3 pgt transfers, the first failed to implant, the second was a chemical. Right now I am about 7 1/2 weeks pregnant.
I understand the grief and anger. I hope you find peace, and have the healthy, living baby you very much deserve.
Thank you for commenting and sharing what happened to you. What you have been through is so cruel and utterly heartbreaking, far too much pain for someone to experience 💔 it is of some comfort when people have been through similar experiences and are willing to share this but so sad that these types of heartaches are happening in the first place. I hope that time will help me process and grieve. I wish you all the very best for your current pregnancy xx
So very sorry to hear your news. It must be unimaginably painful to go through that. Don't give up hope on your dream and I’ll be keeping my fingers crossed for you xxx
I’m so sorry for your incredible loss. I have had 6 miscarriages and finally after almost 3 years had my babies …. Please grieve as much as you need and hopefully a rainbow of hope will come your way. Thinking of you
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Devastated
Second cycle has ended with a chemical pregnancy 😔
Devastated 😢
