Coming to terms with a TFMR.

[charlieecol]

Hello,

It has been 4 days since I birthed my son at 16 weeks. At our 12 week scan the NT fluid measurement was 6.4mm and after CVS testing trisomy 21 was detected. My partner and I made the decision to have a tfmr. When looking at other support groups I feel really out of place. There are lots of things talking about 'losing' a child and I do not feel that way at all. I didn't miscarry, it was a decision I made. The 6th of March will not be his birthday in my mind, in 18 years he wouldn't have been 18 years old because he was born at 16 weeks weighing 100g. I don't think I feel anything like what 'losing' a baby must feel like.
I feel deeply sad, guilty and selfish of course. My baby may have been healthy other than the trisomy 21 diagnosis but my partner and I were not willing to alter our lives in such a way. I do also feel like it was the right decision for us though. Now I am terrified of when we do TTC. I am only 27 and the chances of trisomy 21 were 0.083%, what if it happens again? Will I ever feel 'safe' in another pregnancy? I don't think so. . I have a 1 year old daughter who was a dream pregnancy and birth. After I delivered my son, I lost a lot of blood delivering the placenta causing me to faint and 10+ people to suddenly be in the room poking me with needles, being completely exposed from the waist down, having midwives poking me internally in order to make sure all the placenta was out - much more traumatic and now I feel I have seen both sides of the pregnancy and delivery spectrum. I feel totally vulnerable and unable to talk to someone who may understand as there is such a stigma around tfmr. I think that is what I am really struggling with at the moment, how vulnerable we are and how these things are completely out of our hands. If there is anyone who can relate to any part of this chaotic thread I would really love to hear from you.
xx

Hi @charlieecol, I came on because I wanted to share my feelings and also felt that I couldn’t find a right forum or outlet that matched my heartbreak, I didn’t realise that I would come across a story not only as recent as mine but nearly the same.

I am 28, this would have been my first baby and we were so excited, same as you, our 12 weeks the sonographer looked concerned at what she called “extra fluid” and referred us to fetal med, she didn’t tell us much more than that so when I got home I done what most people would do and google, everything I read was not good, cystic hygroma, high NT... 12 weeks she never told us the measurement. 14 week scan came for fetal med and being absorbed by fear is the only words I can describe this visit having read up on all the horror stories. We were told on that visit that our baby was very small, had large cystic hygroma at the back of her neck and fluid around the lungs and she was “very poorly” we were also told that the baby would not make it to 20 weeks, our hearts were shattered. The outcome of that visit that it was most likely T21 or Turners. The consultant didn’t want us to make a decision that day so said to go home and return in 2 weeks. I was unable to get a CVS as my placenta wasn’t in the right place so we went home. 2 weeks later (now 16 weeks) fluid around lungs had gone! What great news! But everything else still looked bad and hygroma reaching 11mm which is ranked as severe. I told the consultant I needed an answer before we could make a decision as hard as this one. Within 10mins I had the consultant and 2 nurses performing an amniocentesis, hurt like hell (to me) but I didn’t care I wanted answers. On this appointment we found out we were having a wee girl, such a bittersweet moment. 2/3 days later we found out our little girl had Edwards Syndrome, known as trisomy 18, that phonecall broke my heart as I knew we couldn’t continue, for our own hearts couldn’t handle that heartbreak if she survived she wouldn’t for long and be severely disabled, and also for her (who we had named Blake at the start of pregnancy if a girl) we couldn’t bring her into this world with half a heart and knowing she would be struggling. I was brought in to have her on 05/03/21 and she was born 18:51 and weighed 106g. From the start we thought we couldn’t bare to see her after delivery but that changed as soon as I seen her arrive but i do understand women who can’t bring themselves to see their babies over the pain and guilt they are feeling.
I have been listening to baby loss podcasts and I still don’t think they can relate to anything similar to our stories. I have the pain and guilt not only making the decision to let go of our little girl but also the fear of it happening again, the other guilty feeling I have is not wanting to wait too long before trying again as with chromosomal issues they are more likely as you age and it’s something that makes me worried as I approach 30.
I don’t think there is a normal way to feel during all this, the loss midwife who rings me once a week told me a lot of women in same position as us go through very similar emotions and everyone handles it differently, I don’t even know if the way I’m grieving is normal, some random days I’m fine and others hits me with waves of all the emotions you mentioned.

Can I ask if you decided to name your wee boy? Don’t worry if it’s too personal
I’m really glad I found someone with a similar story to mine. Hopefully someone with similar experience on down the road can help us too.
Lots of love to you and your family, and like me I hope you are managing the best you can.
X x x

Hi @Blakesmum92,

Firstly I want to say how deeply sorry I am that this has happened to you too and thank you so much for sharing with me. It breaks my heart that this was your first experience of pregnancy and birth - it just isn't fair at all.
It sounds like you had so many weeks just in limbo of knowing something wasn't right but also holding on to some hope, I had just under 3 weeks of that and it was so painful. I think that as soon as I found out there was the potential that something wasn't right I really started to disconnect and I definitely feel guilty for that too. I suppose it is how we try and protect ourselves though? It is just so scary that we are considered such low risk being well under 35 and it still happened. I completely understand that fear/guilt of trying to conceive again but also wanting to do it sooner rather than later. I have done quite a lot of research lately - I am a full time uni student at the moment but find myself just falling into google rather than doing my assignments, so hard to concentrate. But I've ordered some pregnicare 'conceive' supplements because although we can't alter how many eggs we have, we can absolutely do things to make the eggs we have healthy, like supplements/diet. My partner said that we were just unlucky and there is nothing wrong with my eggs but I just feel like for the sake of £30 for 4 months of tablets, I may as well try!
How did you feel when you saw Blake after birth? (Don't worry if you can't talk about it or articulate it yet). We named out son James, but it isn't actually the name we had picked out for a boy for this pregnancy. The name we had picked was my partner's grandad's name and we obviously didn't want to use it then. But I do feel guilty for almost using a 'back up' name. Because of the whole after birth fiasco I didn't see James until 8am. I only held him within the fabric cot because he was just so small and so fragile. It was definitely much more shocking to see a baby like that but in some strange way it did make my partner and I feeling a little more at peace because he almost wasn't baby-like? The midwife could take his footprints but his hands were too delicate.
How have you and your partner been through it all? I know my partner is probably more reluctant to conceive again then I am but I think it is more because he wants me to be totally ready. Did many people know you were expecting? With our daughter we told our families immediately without a single thought that something could be wrong, this time (because my mum in law was such a nightmare during my first pregnancy) we decided to keep it completely to ourselves for the first 20 weeks as I tend not to have a bump until that point. Now, only my mum knows because we needed someone to look after my daughter during the hospital stay.
I found all the midwives amazing but definitely struggled with the level of sympathetic looks and at one point a midwife had so much compassion in her voice that she started to whisper and I wanted to scream lol. I'm sure that some people really need that but I definitely didn't, probably because it was a 'choice'.
How are you feeling now? Are you working, if so have you gone back to work or are you working from home? The first week after giving birth I definitely just felt waves of trauma hit me. Absolute grief and I couldn't hold back floods of tears. If I didn't have my daughter to look after I may not have got out of bed in that time really. But this week I have felt much much calmer and I have barely cried, it does seem more manageable. And I know it is silly but ordering these supplements and just adding more green veg to my diet has made me feel better too, it helps feeling like I have some control of the situation even if it is small!!
Sending so much love to you and your partner, thank you again for sharing with me. I don't know why it helps to know that you aren't alone, because obviously you don't want anyone to experience this, but it does help.
xxx

Thank you @charlieecol, I’m sorry this happened to you too and we have met under such crappy circumstances, I’m glad you have a little girl in your life to push on for I’m sure it doesn’t stop your pain but I hope she takes your mind away from it as often as possible which can only be a good thing.
I have been doing exactly the same as you, I have continued to take folic and both of us have vowed to eat better, even tho chromosomal abnormalities happen at random I do feel like I’m to blame for it happening, the thoughts of going through a nightmare like this again I think I would struggle with.. your totally right tho, doing those little things to our routine can only be helpful? We were definitely in limbo from early on and I also disconnected from her at about 12 weeks which again guilt pops up for that too, I couldn’t buy nothing, or think about the future. My work did know at 12 weeks but it hadn’t been confirmed as anything sinister at that point so I had people congratulate me which was hard to accept because I didn’t think I was worthy to accept it as I might not get to bring the baby home. Luckily enough I work from home, so that has been some relief for me, I won’t be officially going back until next Thursday and completely dreading it. My manager asked did I want people to know and I said yes could he tell them and ask them not to mention it because it’s still too raw. I find even on days where I’m ok if I am on the phone to someone like GP explaining it I just crumble and I’m scared that’s going to happen with work colleagues. When I saw her after birth it was like magnetic, I don’t know if it’s nature, drugs or what but we had said we couldn’t look at her from start and as soon as she was out I had to see her, I’m glad I did now, il be honest I was doped up, extremely exhausted (I think mentally too from weeks of stress) I felt numb and empty, I knew she was going to be not very baby like from researching before I went to hospital I couldn’t bare to have that shock when she was given to me. Honestly when she was given to me I just felt like a had lost a battle, I didn’t know what to feel, I suppose I felt like I had let her down too, but the midwife asked me how I felt after and I said, I feel horrible for saying this but there’s some wash of relief that I don’t have to worry about her anymore, the weeks of stress was catching up on me and once I had her in front of me it was like that chapter of her book could be closed and I could start grieving for the loss of her and the dreams of what we were going to have in august and start trying to move forward the best we could. Did you know you wanted to see James or did you wait til after he was born? I always wonder if people felt similar to me going through this as well, how did you feel after if you don’t mind me asking?
She was so delicate too, they could only get 1 footprint from her, but the memory box we got from the hospital was lovely and they put some nice pictures in there also. I think it was a nice touch from the hospital, as even tho they were young, and we had to go through this for ours and baby’s sake it doesn’t make their existence any less real. Our midwives were about the same age as us if not a tad older, we were overwhelmed with the support we received from them they couldn’t have been nicer and anymore compassionate, I think given the sensitivity of what was happening to you they probably don’t know how else to act or it’s maybe a go to behaviour on their part.
James is a gorgeous name, it’s funny you mention your back up name, my mum passed away when I was 21 and decided that I wanted her middle name to be after his mum instead as she was still alive to appreciate it, so when we knew she wasn’t going to make it we decided that her middle name was after my mum as she would be ‘joining her’ and keep his mums name to use if we have a rainbow baby who is a girl.

How has your partner taken it all? My partner is quite sensitive and has never had grief before and it’s hit him hard, having the support of eachother I think really helps, I think men get left behind when it comes to grief as a lot of them can pass it off easier. I have to remember from time to time to ask him how he is.
Even tho we made a choice, it was a hard choice and if it were up to us our babies wouldn’t have chromosomal abnormalities and we would be sailing through our pregnancies like everyone else, the choices we made were made out of love, love for our babies so they didn’t have to struggle in this world with disabilities and love for our current families and ourselves. It was a choice but one that didn’t have nice options either way you turned, I almost feel backed into a corner to make the decision as both decisions are heartbreaking as the other. You will always be James’s mummy and il always be Blake’s, the choice we made was the best out of all bad options (for us) be kind to yourself and eachother and message me if you ever need a chat, I still find I’m stumbling my way through this process and it’s nice to know I’m not alone.

@Blakesmum92 such horrible circumstances to meet under but I am so happy you posted your message! Percy (my daughter) has been a ray of sunshine since conception really. My brother was diagnosed with brain cancer a few months before her conception and he lost his battle 22 hours before she was born, the joy she has given my family and myself is such hard times knows no bounds. Sometimes I do feel like 'haven't I suffered enough' but I quickly rein that in and remind myself of Percy and my partner.
I'm glad at least your manager can let everyone know for you, I genuinely cannot fathom speaking to someone aloud about it at the moment, I can keep it together most days now but I think if I had to talk about it to someone other than my partner I would just crumple. I hope you manage to find your way through that as best you can.
Initially my partner and I were certain that 1) we wanted a surgical termination 2) that we didn't want to dress him or even see him 3) that we wanted the hospital to cremate him for us. The consultant basically talked me out of a surgical abortion due to risk so everything else changed from there too. We found out the gender once we knew it was going to be a medical termination and I was going to have to give birth, on the way to the hospital we decided that we did want to see him and make a memory box and that we were going to bring him back to my mum's house and bury him near where my brother's and grandma's ashes are buried (I'm not religious but I like to think of him 'joining' them too). So many horrible decisions to make in such a short amount of time was truly exhausting. But like you, I am really glad that I did see and hold James, and you are so right, I did feel that sense of relief too. I suppose once it had all happened you could deal with it, the not knowing part is always so much harder. Seeing that he was so small and only just recognisable as a baby is definitely traumatic but has helped with the guilt somewhat.
Yes my partner is quietly sensitive too. I think the added layer of seeing us in pain and having to endure the physical aspect of it must be so awful for them too. I still feel so so guilty about this, the midwife wasn't in the room when James was born but I had said to my partner that I felt a lot of pressure and I needed to move up in the bed a bit, he was helping me up and before I could even say anything James was born and my partner saw it very clearly without warning. I remember seeing just the shock on his face and I really wish I had been able to give him a heads up to prepare himself I suppose. It is silly as he doesn't in anyway think I should have warned him (even if I could) but I know that memory will be with him forever. He had been working from home but on the Monday (James was born on Saturday) he had to return to work from his workplace which was really hard for him. On the following Friday he let all his emotions out that he felt he had to keep in during the work week. We are so lucky that we had already had discussions prior to getting pregnant about what we would do if there was a chromosomal abnormality with the baby and we were on the same page. I can't imagine how much harder it is for people who feel differently to their partner.
How have you been physically after it all? I am still bleeding and over the past two days I have had really strong period pains but before that it was relatively pain free. I did a pregnancy test yesterday to see whether my HGC levels have drop but two pink lines came up very strongly so clearly my body is still hormonally all over the place! Even recovery is a long process.
xxx

@charlieecol so sorry to hear about your brother, I’m sure your emotions were all over the place going through that, It’s lovely knowing little Percy has been a ray of light in your darkness. Grief is a powerful thing and I think after losing my mum it made me hardened to it, which has probably made me stronger going through this, you maybe have felt the same coming up against similar feelings to the ones when you lost your brother, I think losing a brother and a baby is enough suffering. God love your partner for what he had to witness, there was no way you would have known, I’m sure he understands, whenever I asked to see Blake I didn’t even think of my partner, I was coasting on drugs and hormones and that magnetic pull I spoke about lol I didn’t consider if he wanted to see her, it didn’t enter my mind, in the end he said he was so glad he did so it’s crazy how things work out. my heart goes out to your partner for having to go back to work so soon, the week after I couldn’t even drag myself out of bed and my partner was sobbing randomly so it’s most certainly not an easy thing to do. I had asked for a surgical termination too because I had thought how can I birth this baby to bury her, it seemed impossible emotionally for me to do that, I wanted to be sedated and have no connection, however as I’m in Northern Ireland, surgical termination isn’t allowed after 14 weeks I believe, and as I was approaching 17 and by the time I had her nearly 18 that would have been out of the question but.. things really do happen for a reason, I was so glad in the end I had to deliver her. It meant she got her birth and we got some memories with her but it did make me feel selfish I had those thoughts at the start. I totally agree with you, the not knowing is agonising and completely exhausting. We also like you said we wanted the hospital to cremate and scatter the ashes because we thought it would be too hard and then changed our minds, we actually found out today her ashes are ready but we are going to leave them for a month when we are abit more stronger. The loss midwife suggested putting some in a flower pot so if we ever move she would always come with us, I liked that idea so that might be an option. That’s so lovely he will be with your family, I think that alone brings great comfort, neither of us are really religious but there’s something really nice knowing that he will be with them. It’s a real eye opener when you meet someone with such similar story and feelings nearly exact, it’s something that for me personally makes me feel like I’m not a monster for not crying all day everyday or having those feelings at the start, they are normal and we can’t be the only 2 people that feel this way. I had 1 or 2 clots some days I bleed and some days I don’t or not much, they did say could be like this for 6 weeks, I actually said to my partner this morning it feels like my period is coming that dull achey feeling. I don’t even know how to tell when this has stopped and my period has started, I never even thought of taking a test to check, hopefully it’s not long until this part is over, never thought I’d say this but I can’t wait for my period to be back to get some normality about my body again. X x x

@Blakesmum92 I'm so sorry to hear about your mum too, what was her name if you don't mind me asking? I can't imagine losing a parent so young and still so recently. Do you have siblings? Losing my brother has definitely hardened me too. Seeing my mum in so much pain was utterly hideous. But now, whilst I really sympathise when someone loses someone, I struggle to engage emotionally with it anymore. If that makes sense? It is something I don't fully understand yet so I really struggle to articulate what I mean properly lol.
I think wanting a process that is as detached as possible is such a natural feeling. That is completely what I wanted and if the consultant hadn't said that a surgical termination was riskier and that it is traumatic for the surgeon to perform I would have definitely elected to have it. The thought of putting a surgeon through the trauma of it seemed so selfish but I am glad it happened the way it did. I have felt much more upset this morning, amazing how it just comes in waves. I said to my partner that I miss the feeling of being excited for a healthy baby to arrive. Whilst it was only 4 months of visualising a new future, it's a future I still want and now I don't know for sure if it will be reality. I flick between feeling very calm and having this deep feeling of 'knowing' I will have another little girl one day (not sure why at all??) and just being completely flat. No in between!
I think it is such a nice idea to have some in a pot with flowers. In our memory box we got a packet of forget me not seeds which I thought was lovely. I know my mum always planned to sell her house and move into something smaller when she is older but now the majority of my brother's ashes are here, I don't think she ever will.
I really hope we don't have to bleed for 6 weeks.. After having Percy I lightly bled for 6 days and that was it. My boobs are definitely feeling less tender now though which is something at least. Maybe although no one else is commenting people are still reading and finding some comfort in our shared experience, I hope so. The first week before you commented I felt very alone in this process, I know my partner is happy that there is someone I can related to and who can relate back. :) xxx

Hi @charlieecol her name was Elizabeth/Betty, she died when she was 48 from a heart attack, it was a massive shock to the family as I think even when someone is 48 you never in a million years think their life would be cut short, unfortunately it seems we both share that in common too. I feel with my emotions, almost like they are blunted or I feel somewhat desensitised, my sisters tell me they feel the same after mum (I don’t know if yours are any similar?) my heart goes out to your mum I can’t begin to imagine the pain she went through and I’m sure still is, do you have any other siblings or close family? I have 2 older sisters and a stepdad, I was fortunate enough not to be living at home at the time and had already bought my house when I was 19, the housing executive wouldn’t let us keep her house even for my older sister to move in so it was just as well I had been out already, as I can imagine people in similar circumstances at my age being put out of their home at times like that, was just awful. We were lucky we had eachother, I think it’s the only thing got us through, but when things like this happen in your life your heart still yearns for a chat and support from your mum which is still something I’m struggling with separately. My sisters are 6&7 years older than me so they are very supportive and protective which is nice that I’m not completely alone, they also have children too so they are extremely sympathetic for my current situation.
Sometimes I still think I’m pregnant and when the reality hits that she’s not in there anymore I get an overwhelming wave, I feel the same, I miss the planning for this new wee person in our lives and that joy we felt when we spoke about her arrival in August and from that when I think about August now I’m filled with dread of how my heart will break once more come her due date. I had to get a rubella booster at the docs the other day as I’m non immune and I need it before we try again, and I asked the doctor how long before we can try again now that iv had this booster because the loss midwife said you can’t try straight away, she looked at me like oh I’m sure with the emotional side it will be a few months before your ready and I was saying but I’m not talking about the emotional side I’m asking when am I allowed now I have had this booster because I can’t straight away the loss midwife said because there will still be some vaccine in me, she looked at me like I was a monster like you have just lost a baby why would you be talking about trying again so soon, it’s not I want to try right away, probably will be a couple of months but I don’t want to wait too long, I’m older now which doesn’t help and I was mentally prepared for my baby so I do need to try again soon, for us. I feel that there’s so much judgement around trying again after a loss and I think it’s unfair. I know my next pregnancy I won’t enjoy a single second of it until that baby is in my arms. Intuition is nearly always right and It’s a lovely thought for you to have another little girl, those thoughts is what pushes us through the grief or hard days.
Forget me nots are beautiful, I still don’t know what we will plant as I don’t want something that only comes in season, I’m not the best gardener in the world either so I really do need something idiot proof lol. I’m sure your mum will like the fact her grandson is with his uncle and family too. We are planning on selling this house within the next year so we don’t really have an option but flower pot then when we move we can transfer it over to a flower bed or something.
When the loss midwife rung me yesterday I was telling her about this forum, I said it’s so hard to find one for our situation because how can I relate to a mother who’s lost her child full term and never expected problems and leaves the hospital empty armed, I can’t, I’m not taking away our grief and our loss but I can’t bare to think of those women and trying to get through that, it’s such a different situation but one we were prepared for but it’s still a different type of pain and full of mixed emotions, I said I felt nothing related to me and I felt very alone also, so I was relieved to see your post. I do think there will be other women reading this at a point they find themselves struggling in the same position and be glad that they have found our chat. If your ever having a bad day or wobble send me a message. You are most certainly not alone x x x

@Blakesmum92, did you give baby Blake Betty or Elizabeth as the middle name? A beautiful name - and my middle name too as it would happen! That is just so shocking. 48 is too young. I'm glad you have older sisters for support, I have three older sisters (my brother was older too) and I have a really nice relationship with my two eldest. They are 12 and 10 years older and have 8 kids between them. I know we have all really struggled with my brothers' passing but in different ways. I moved back home to help mum care for him and struggle with the fact I saw him slowly just lose the ability to do anything and then be in bed unable to eat or speak for his final 3 weeks. They struggle with not having been able to be around or help enough. But like you and your sisters, we absolutely feel desensitised to other things now. My partner lost his uncle suddenly in December and although I felt very sad for him and hated seeing him so upset, deep down my thoughts were 'he lived a long life, he did not have healthy habits at all, at least he didn't suffer'. It's hard not to feel like you're a bit of monster thinking things like that.
I think it is really nice you have your sisters for support now too. I haven't told my sisters - partly because I hadn't told them I was pregnant in the first place. But, I do fear that there will be judgement with electively having a termination for Downs Syndrome. I love them dearly but I think it is very easy to have opinions on things and think what you would do until you are in that situation. This again will sound awful but my sister who is 10 years older (38 soon) is trying for her 6th child and in no way do I want her to experience what we have, but I cant help but feel like, you have 5 healthy kids and you are so much older, why am I the one who feels faulty?
When was your due date in August? Ours was 22nd. Had you started to feel Blake move yet? I was terrified of feeling James move before having the termination. I felt Percy from 16 weeks so strongly.
Honestly the story with the story about the doctor when you asked about when you can physically try again made my blood boil. I hate that so much. Only you can decide when you are ready and there is nothing wrong with feeling like you want to try as soon as you are able to. But it is just getting all of the facts isn't it? Then you can make an informed decision for what is best for you and your partner. I completely agree with you that it is unfair to have that judgement. I honestly think about trying again about every 5 minutes haha. I think we will try again in Jul/August because then due date will be in May and then is when I break up from uni for 4/5months. That plan gives me great comfort. I also 100% agree with you that I won't feel 'safe' in pregnancy ever again. Or in labour now actually.
Completely agree with you. I was reading about Abbie'sFund who provided the memory box for me at hospital and the founders sadly lost their baby at almost full term and just a few days before a planned C-section. I just sobbed, and I knew that I could never understand that pain and it would feel so wrong to send her a message like I could understand that level of grief.
xxx

Hi OP. I can certainly relate. Just over 2 years ago I had a tfmr at around 18w. Our boy had T21 and some associated abnormalities. I have experience working with people with Downs Syndrome and know that, despite lovely high profile success stories, most people with Downs have very restricted lives with health issues. We didn't want that for our child, or his siblings. The gamble seemed too great. As it turned out he probably wouldn't have survived to birth but we may well have made the same decision with less obvious physical issues.

I agree with what you say about a different kind of loss. I worry that people will judge if I talk about grieving, and have been careful about who we have given the while story to.

In the early days i called ARC-UK a few times. They are lovely and you can say absolutely anything. That was great. They also have an online forum for people who have had tfmrs.

2+ years on I can say it does get better. I know that things will never be the same but we certainly have happiness and enjoy life. I had a missed miscarriage exactly a year on (no chromosomal abnormalities, just bad luck. I'm in my 40s so high risk). That really floored me and brought back difficult memories.

The other thing that helps is avoiding media coverage of Downs. There is a fundraising day this week so I am avoiding facebook! Obviously I want people with Downs to have great lives, but hearing about it is not good for me psychologically. In the early days we had to avoid stuff like Something Special.

There is also a ttc/pregnancy after tfmr board under antenatal tests here. We have stopped ttc now as I am OLD and we are lucky to have 2 kids already, but I understand most people are successful trying again.

Take care, be kind to yourself.

Op, I am so so sorry that you have found yourself in this position. Please feel free to message me x

Hi @SylvanianFrenemies,

Thank you for sharing with us, as mentioned in an earlier post I was hoping that someone that had went through this before in the past would share their feelings from on down the road perspective as right now it can feel like a very dark place to be in.

I’m sorry for the loss of your wee boy, as I said to @charlieecol making the decision seems to be a hard one to cope with at times, I know we made the right decision in the end but it doesn’t take the pain away from making it. I hope those feelings will at least ease over time.

My heart breaks that you went through another loss, to me I think that would chip away at my soul everytime it were to happen. It’s sad that women have this biological clock looming over us, as mentioned again in a previous post I worry now with getting older that there’s a chance it will happen again.

Thank you for sharing your story with us, it’s getting a lot less lonely the more people join us I will have a look at the TTC forums in a month or 2 when we are ready to try again.

Hi @charlieecol
Her middle name would be Betty, I love Elizabeth too but my sister used that for her wee girl last March.
A good age gap then like myself, I think it’s good because I think older siblings tend to be more protective etc. My mum had to look after my granda when he was slipping away due to bowel cancer and knowing what that entails I have deep sympathy for you and your mum, seeing the person you love slip away mentally and physically is heart shattering and the age you were and doing it for a person that was too young to be in that position is devastating, it seems you have been through so much yourself, I lost my granda when I was 13 and watching him lose his battle to cancer is one I will never forget, I can only imagine your heartache and grief you still carry with losing wee James too, Percy is a lucky little girl to have such a strong mum.

My due date would have been 07/08/21, seems like James and Blake weren’t that far off eachother! Her due date is actually my eldest sisters birthday, I didn’t feel Blake kick but as weeks went on I was getting more worried and self aware that it could be a possibility and it was heartbreaking, I felt some flutters, she was very active little baby, every scan she was like a jumping jellybean, didn’t sit still for very long so I was nervous it was only a matter of weeks before I would feel her kick. I think if I would have felt that I would have struggled worse than I am now, that’s a bond you can’t ignore.

Yes I am so ready for my wee baby now whenever he or she decides to join us, losing a baby doesn’t take that mental state away (for me personally) I’m just a mum without a baby. That’s a nice idea to have that gap, TTC again I’m thinking around May/June for myself, to allow myself to have some normality with my body and healing time for Blake.

Me and my partner made a savings plan and house finishing plan when I first found out I was pregnant and we are still on track with that plan so far, they are great for keeping your mind focused, how lovely if you had a may baby, I hope you share your good news when the time comes, I think the both of us deserves some good news this year.

I think if you haven’t went through this before you near enough don’t know stuff like this exists, well you know it’s out there but you don’t know the full ins and outs, I didn’t know chromosomal abnormalities increase with age, so that has given me fear i never knew I had. I feel the same, I find it hard to even look at my sisters with their wee ones and hear women getting pregnant much older than me and skipping through pregnancy, like my aunt 41 no issues, boggles me women like us so young have crappy luck, or as everybody in the hospital said it’s like winning the lotto (I think their idea of winning the lotto is a lot different to mine lol) sounds like your sister has been incredibly lucky to have 5 children without a problem or never have encountered a problem, the loss midwife said my naivety had been taken away, so people that haven’t faced this before it probably never enters their mind. I envy that now, I wish i could skip along without a worry in the world, unfortunately il never be that carefree again when it comes to pregnancy which is the sad truth.

Hope your feeling a little better today, I think I’m going to venture out of the house for a walk with my sis for the first time in weeks, trying to put some normality back in my life for starting work next week. Did you manage to get a break from Uni? X x x

Hi. I had a TFMR in September last year, opted for surgical as it was recommended. I am sorry to hear of your experience, that must be a lot to deal with, given the trauma of the process and having to have extra medical help.

We are getting on okay. Though it is a sad event for us, it was not something we could have prevented or changed. We got diagnosed after a very high reading on the NT, followed by a diagnosis of Trisonomy
21.

I’m 32, so wasn’t high risk and have one healthy child who’s 2, so I can say - I am sure it will happen for you. The first pregnancy was a breeze so this one was really a shock and that scan was the worst day - I knew it was over there and then.

We did not find out the gender or name them as that would not help us personally. I find TFMR is really not known about and I think people assume we miscarried. It is not the same experience as a miscarriage, it is different - the decision was not hard for us but still it was a choice we made.

Fingers crossed for a safe and happy result for you in the future. We are trying again but not in such a rush as covid parenting has been hard, in an odd way it is actually a relief to me to not have a baby and a toddler without family support right now, as our mental health has been tested recently.

My one worry now is for my older siblings who wish to have children, as that is where the increased risks lie & I don’t feel that people are being given this information until it is too late.

Take care of yourself. Xx

Thanks @Blakesmum92. I'm so sorry for you and everyone here who has had a tfmr. I was 41 when I had my tfmr and 42 when I had the miscarriage, so I wouldn't want my experience to worry you or @charlieecol too much. We knew we were taking a chance. Also with mentioning that I had 2 successful pregnancies before, one mid 30s and one late 30s.

I also wanted to mention to you both that, even though it has been hard, my DH and I still feel we did the right thing. I still have a wee cry every few weeks... on the anniversary I said to DH I still feel guilty. He said to me "you did the most loving thing you could". In my heart I know that's true, and true for all of us.

Hi @SylvanianFrenemies and @LittleLottieChaos, thanks for sharing your stories with us. I know that all these emotions will settle and eventually they won't hit me like a tidal wave but it helps to hear from people some time on from a tfmr to confirm it! My mum has also said to me that she thinks it was the most brave and selfless decision that anyone could make, I don't believe that yet but maybe in time.

@Blakesmum92 I had an nightmare day. I went to hospital after having some pain and scary looking clots which didn't smell ok (sorry probably tmi) and it turns out I have a womb lining infection. Nothing some antibiotics won't sort out but it was more invasive examinations, more time spent waiting in hospital and I have to go back for a scan tomorrow. I just want the recovery to be done...
Did you get out and go for a walk with your sister today? The fresh air is a real healer for my partner and I. Unfortunately too much of a break from uni for me today which means working on Monday and Tuesday to get an assignment finished off but once that is done I can enjoy the Easter holiday. xxx

Hi @SylvanianFrenemies

That gives me great hope for the future you had 2 successful pregnancies in your 30’s, after having this happen to me I’m just filled with fear for the future so this does bring me comfort.

Thank you for giving us an insight to what life is like after, Im sure it’s something that you never get over just learn how to manage it and time maybe makes it not as raw. really appreciate you chatting to us, it’s just to reassuring to hear other women’s stories and know the feelings we have are normal.

@LittleLottieChaos, thanks for taking the time to chat to us, it seems there’s more people out there that has went through this than I had originally thought. I think when given the diagnosis the decision out of our hands, when it’s not something that can be cured after birth and life changing for everyone there’s not much options really.

@charlieecol oh no!! This is awful having to see the hospital again :(, I’m glad you picked up on it and getting it treated.
I’m sure you are fed up, hopefully it heals quickly for you! Did they say how long it could last?
My sister changed until tomorrow but I did take the dog out, I haven’t been out in weeks and we both needed it, but def cleared my head so I’m looking forward to another one tomorrow.
Hopefully you can get your assignment finished for Easter, or could your teacher give you an extension? You maybe don’t want to share anything with uni just might take some pressure of you while you get back on your feet. X x x

@Blakesmum92, I know I really hate hate hate the hospital now. I was back again yesterday for a scan which showed there was no pregnancy tissue left that shouldn't be there but a lot of other tissue left to come out so I had to take the medication to make you contract last night to try and speed it all up.
I'm glad you got out for a walk and that it helped you feel better. How nice would it be to be able to book a holiday and just escape to somewhere with a clear blue sky and delicious food for 2 weeks? :')
I did get in touch with uni yesterday to apply for mitigating circumstances, I tried to limit the details of the story as much as possible though. I realised yesterday that it has been 5 weeks since it was first said that something was wrong. Somehow it feels longer.
xxx

@charlieecol, I’m really glad your getting it treated, nothing worse than having to go back to that place, hopefully you have some rest & get the hot water bottle out.
I was saying this to my partner, it’s been 3 years now from we were last away on holiday and would be busting to get away, hopefully the weather picks up for us at least we can get some sunshine over here, I always think it makes my mood better.
I had to go through my work emails yesterday and I didn’t realise I had been off for a month, or maybe just over, but i was thinking it felt longer too it’s really been a blur. Iv been having some wobbles past few days but I think it’s the reality of moving on with daily life without baby/pregnancy. How have you been getting on? I’m sure the revisit to the hospital hasn’t helped. Did you have to stay in hospital or did they send you home?
Hope your feeling better soon x x x

@Blakesmum92 haha I love a hot water bottle and all through this pregnancy I was attached to one!
I think you go back to work today right? ( I may have got that wrong) if you do, good luck. I hope you manage as best as you can. Maybe more of a routine will help with the wobbles too? I've been having some wobbles too but I don't really know what specifically it is about. I'm still just frustrated that I am taking antibiotics and having a minor allergic reaction to them, my eyes are swollen and itchy which isn't helping.. I suppose I just need to make peace with the fact that it is a process and it'll never go in a straight line however much I want it to.
My mum's artist friend is painting some forget me nots and snow drops on a piece of slate so that we can mark where James is buried. I think I want his name to be on the slate too but then when my sisters are over they will see and it'll need explaining. I think I'll get his name on it and not put it on display until we are ready to tell them maybe.

It was just Sunday afternoon in hosp and then back again for most of Monday. When I had my scan on Monday the sonographer asked what had been happening since my termination but her voice lowered when she said termination and although it seems like something small, it felt like it was awkward? I suppose people do feel awkward when discussing terminations but that is why it feels like such a taboo, even when there isn't really a choice. xxx

Hey all, so sorry reading all your posts.

I had a TFMR in September, at 22 weeks. First pregnancy, my daughter had a series of serious heart issues that were 'not compatible with life'

I found the worst part to be justifying the decision to certain medical staff, even given the diagnosis. They knew, and had been very clear that the pregnancy was unlikely to go to term, and if it did that she was unlikely to survive birth or the first few hours, but we still had to explain why we were making the decision we were, which felt ridiculous.

We were so lucky with our hospital that there were amazing provisions and teams around us. We had a wonderful room and incredible team supporting us the whole way through, and it really helped. We left with a memory box full of pictures, had/foot prints, and a 'birth certificate', and the chaplain did a blessing - but one of the hardest things for me was leaving her for the last time. It was easier knowing I was leaving her with people who were kind and would look after her, but still the hardest thing I have ever made. My DH had to hold me when they took her out the room the last time. Even now, six months on, I'm in pieces thinking about that moment more than any other.For me, attending her funeral, organising flowers and songs etc, was quite helpful - it helped me feel like the situation was more 'normal' in a way.

We didn't tell many people the full story for fear of being judged - the line we took was that there were major anomalies and we had to have invasive tests that carried a risk of miscarriage- we had to say something, my DSDs9 and 15 live with us and their care and support had to be managed by my parents, supported by schools etc. We have subsequently told more people and everyone has been totally understanding, which has been really helpful. Even when you know you've made the only decision you can, it's good to have it validated and be able to talk openly, I think.

Like you OP, I had a massive blood loss at birth, and had to have a manual placenta removal. My DH later said that the amount of people that suddenly flooded the room after her birth, the amount of blood and me totally 'going' was the worst moment, as he thought he was going to lose me that day as well as her. I subsequently ended up in hospital for surgery three months later on sepsis meds having the rest of my placenta removed, as half had been left in situ. Please keep an eye on your bleeding and make a fuss of you don't feel normal. Don't be polite like I was x

@charlieecol , yes I started back work today, thank you , once that initial contact was made with the team the anxiety definitely lifted, I manage a lot of drivers so once they have made the first contact with me and no one probes me about it I think il feel much better, but first day far better than expected, it’s good to have my mind being kept busy. I def had less wobbles today and I think it was because of that.

It seems your not getting a break with this at the min, my heart goes out to you, it’s hard enough dealing with everything and the bleeding after never mind all you have had to put up with, I can imagine it’s not helping you being poorly when mentally you’re trying to get better too. I hope that you get better soon and can try and focus on getting back on your feet. Yes I agree with you with there being a taboo around the subject I felt this with my doctor too.. I also hate the way it’s called a termination, it brings people’s minds to thinking the baby wasn’t wanted when in fact it’s a forced decision and all these wee babies were wanted.. cmon docs, think of another term fgs! I find that frustrating personally.

Omg that would be lovely with forgetmenots, you could get your own wee flower pot for your own home and maybe put some ashes in there so yous can place what you want down without being worried someone will ask you? Or maybe even without the ashes but you can get an outside tree to fit into a large plant pot just for remembrance on the dates that mean something to your wee family and James. I think I’m going down the flower pot route just because Il be moving too, so it started off as that purpose, but also if I go on to have kids eventually I would like them to know who she was and maybe plant things there or put something down for her. That’s the plan anyway, still need to pluck up the courage to collect the ashes, do you know when your collecting yours?

I was going to come on today after work and ask about you, your on my mind often, hope your getting by. Il chat to you soon x x

Hi @SlipperTripper
I’m so sorry you have went through this, and also being poorly after.

I felt the little memory box helped us too; our nurses were wonderful, so compassionate and also tried their best to get footprints and pictures I think it really helped me and my partner, we got a glass tea light in ours and we light it every night. I think it’s a really nice touch from the hospital to take the consideration of the parents on board and acknowledging the birth of a wee baby.

I’m really glad you had support, it really makes all the difference when your trying to get your mind around what has happened and coping with the waves of grief.

I found leaving her very distressing too, and something else that I hadn’t considered was walking out those front doors empty handed, we both opened the doors and as soon as we got out we realised we were only holding her memory box and not her, it was such a strange moment because me and my partner looked at eachother at exactly the same time as tho we had both had the same thought and we both just wept the whole walk to the car.

I know from talking in this forum mentally I feel like I’m not alone, I’m not the type of Person who usually talks about their feelings or reaches out for help, but coming on here was definitely one of the best decisions I have made. Thank you for sharing your story X x

@Blakesmum92 hope you’ve had a good few days. I decided to have a little break from social media for the weekend. My Instagram algorithm is just all pregnancy and newborn related things which is nice to see but it also feels like a bit of a stab too!

I’m glad your first day back went ok, I’m sure there’ll still be hard days for a long time but I personally do much better when in a routine.

Physically I’m infection free which is so good and now off the antibiotics so my eyes are not swollen anymore which is also a plus haha. Still bleeding though but I’m hoping that the physical recovery is almost all done now. Are you almost fully recovered?? I agree, termination also sounds horrible, abortion even worse.

Yes I love the flowerpot idea! We actually decided to bury James rather than cremate. Purely because at the time my partner and I decided we couldn’t bare going back to the hospital to pick the ashes up. He’s buried in my mums garden with snowdrops planted where he is. I think that we will definitely get a pot of forgetmenots for our house. I think it’ll be lovely for Percy to be able to tend to them when she is older and you’ll be able to do that with your family too.

It’s funny isn’t it, I think about you often too and hope you are doing okay! xx

Hi

I had a termination at 14 nearly 15 weeks yesterday. Septated cystic hygroma, not growing, suspect downs or turners and basically not a viable pregnancy (awaiting CBS results). I’m ok. Just a bit sad. But can I ask, was anyone warned about the experience? I knew it wouldn’t be pleasant, but I ended up in full blown labour. Contractions for three hours and sat on the loo for two hours rocking with a nurse rubbing my back? Not at any point through the last two weeks did a nurse or midwife say it would be like labour?!!! I feel like ladies should at least be warned about this, I know everyone’s different but I’m a bit traumatised to be honest. I don’t have any children so no idea if that’s what full term labour is like (I’m buggered if it is 😂).
I’m also petrified about becoming pregnant again. Feel a bit doomed and useless. I’m a trauma scrub nurse as well so due to the nature of my work everyone at work (100 or so people) know I’m pregnant and know this is happening so it’s going to be really overwhelming when I go back!! xxxx