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 @Dogmum200290, so sorry this is happening to you. How are you feeling today? I hope you’re physically recovering as best you can be.

For me I had some period cramps for a few hours but just kept a hot water bottle close by. I’ve had a daughter and for me, that was 100% more intense. Everyone is different though and it sounds like you had a much much more painful experience then I did. I also don’t think that anything more than “you’ll cramp and contract until the baby is born” was said. There were so many different doctors, nurses and midwives involved along the chain that they probably assumed the conversation had already been had!

Totally understand the fear of becoming pregnant again and for me, that feeling was much stronger right after, it’s almost been a month now and I’m feeling much more calm about the future. I would say that as I’m sure you’re aware your hormones are going absolutely haywire at the moment and when they settle a little more, hopefully you will feel better about becoming pregnant again. Unfortunately we have all lost our naivety with pregnancy now though.
How much time do you have off work? I can imagine it must feel daunting going back with everyone knowing, I find it really hard dealing with people being sympathetic but once you’ve got that first day done hopefully the routine will help.

@Blakesmum92 hope you’re having a good week back at work xxx

@charlieecol thank you so much for replying. I’m ok, The foetal med consultant rang me today and said it was confirmed Turners which I hadn’t actually expected, and that and the hormones and stuff just ended up giving me a complete meltdown. Like absolutely wailing, woe is me sobbing on the sofa for a few hours. But I felt better afterwards. She has referred me for counselling and genetic testing which is good. But daunting. Luckily I know the foetal dr at my local hospital so going to try and get an appt with her ASAP rather than waiting the six week follow up.
Yep I had a hot water bottle for a few hours, but the third dose of tablets just kicked it all off and I ended up cramped over the toilet for two hours (sorry TMI) then on gas and air and having to sodding breathe it out and pacing in absolute agony for three hours and then realised that I was having contractions which grew and grew and eventually the pressure on my tummy the nurse told me to push! i asked her if this is like a hint of labour and she said some people have exactly the same labour experience except you don’t have to push much. I think it’s just traumatised me. I was traumatised after the Amnio last week as well.
But yes, I mean at least it’s an answer and can only hope that it doesn’t happen again or affect future pregnancy. I’m 31 so sort of feel I’m not getting any younger type thing.
But yes I agree, the naivety and enjoyment and anticipation has been completely wiped out of pregnancy for me forever I think.
Thanks for replying!!! I hope your well xxx

Hi @charlieecol, yes I have had a relatively good week, being busy at work has really been keeping me from crumbling. I’m glad I went back when I did even tho I was very anxious about it.

That’s a good idea taking a social media break, I stopped social media all together about 4 years ago and I haven’t looked back! But I always took social media breaks and I really think it helps.

Yes no more bleeding for me, I am patiently waiting for period to make an appearance and il be glad to see it, just body getting body back to normal. That’s great your on the road to recovery and even better no infection, you had crappy luck after that experience so I’m glad things are looking up.

Sorry I was getting you mixed up, I didn’t know James was buried. We are yet to pick up the ashes but we have to go to a crematorium to get her so that’s probably just as bad as a hospital fgs. Seems like prolonging the whole process but we can’t bring ourselves to do it just yet, prob another few weeks then maybe we will.

Awww that’s lovely, I’m sure Percy will love planting things and leaving things for her brother just such a lovely thought to keep them apart of the family.

You get uni sorted before the Easter break?
Now I’m back at work I’m hoping I enjoy my long weekend.

Hope your doing well, chat soon x x

Hi @Dogmum200290

I’m really sorry you find yourself in this forum, I think it’s echoed in here that your not alone.

Our little girl had a cystic hygroma 11m and was diagnosed with Edwards Syndrome we said goodbye to her at nearly 18weeks.
We weren’t told much in terms of labour, but because I google EVERYTHING lol I knew what I was in for, the pain was unbelievable for how small she was and I had the same thoughts as you after (how am I going to birth a full size baby when the time comes) but I think I would go through that 10x over just to have a healthy baby in my arms, it’s incredibly sad that you have to go through it knowing that your baby hasn’t made it. I asked the consultant for a surgical termination as I didn’t think I could face seeing her, however apparently if over 14 weeks then you have to go through labour and here in Northern Ireland i think it’s even less lenient on surgical termination. I was glad in the end that I birthed her, said goodbye and got some memories of her, funny how things work out in the end.

I only started work again last Thursday and I found emailing my boss and asking him to inform people before me coming back really helped, I also told him to tell everyone not to bring it up to me as it’s still incredibly raw and I would just turn into a blubbering mess. I was filled with anxiety right up and through my first day, but after my first day I felt the anxiety was less. Just shy of a week later and I’m feeling much better. If you know someone you work with you could ask them to maybe inform people or maybe ask your boss to tell people so no one asks you? It’s a really personal choice on how you want to handle work and workplaces are different too, I hope when you do return you make an easy transition and have few wobbles. I found coming on here and having a chat with girls that’s been through it really comforting but everyone is different, definitely take some time out for yourself and if you feel your not ready to go back make sure to take the time you need to recover mentally.
X x

Hi @Blakesmum92 how are you?

It's crazy to think it has almost been two months since our losses. It feels like longer ago but the pain still feels so fresh at times. I've been having some weird wobbles this week. Finally finally my bleeding stopped last week and I bought some ovulation tests to see whether maybe my period had just merged into the recovery. I saw a spare pregnancy test in the cupboard so I took it along with the ovulation test. The ovulation test was strongly positive and the pregnancy test was faintly positive. Since then I've taken several pregnancy tests and they've all been negative but I have just been convincing myself I am actually pregnant. It is strange, I am usually a very rational person. I think because we had unprotected sex the night before the ovulation test came up positive I am telling myself there is still a chance I am pregnant.

It is a rollercoaster sometimes. I know it'll get easier but it really takes me off guard how I can not think about it for hours at a time now then suddenly it can knock me off balance for days. I hope you are doing well. Have you been to pick up Blake's ashes or planted your flower pot yet?

xx

Hi @charlieecol, lovely to hear from you, hope your keeping well.

We have booked next Friday off so we can go get her ashes, I’m dreading it actually cuz I know what emotions that will stir up but at least we are off the coming Monday for May Day so least we will have a good break before returning to work.

I’m so glad your bleeding has stopped. I was relieved myself and I didn’t go through that aftermath you did, I have been doing same as you strangely enough, I have been taking ovulation tests just to find out where my normal period was starting, just so I can start counting normally again, it happend with us too! I took a ovulation test which came up negative, we done deed and next day 2 bright lines, we def didn’t aim to try, didn’t expect I would be ovulating Next day, was 3/4 days early for me, after me having that rubella shot I’m supposed to wait at least 4 weeks, it has been just over thankfully, so I’m currently waiting on next period to show up, only 4 days past ovulation so far, so I will have to see what happens now! I will probably be same as you when period is supposed to be here and drive myself crazy, I think it’s because we are still aching for a wee baby or a baby that we should still have been carrying. We haven’t spoke of her in weeks because when we do it makes us upset for days. How have you been getting through your wobbles? Working is kind of sorting mine out for me, I don’t have time to think about much else but when I do have time it seems that’s when it hits me.. I have been walking the dog a lot and reading books, but I find it hard to focus even on them. How have you been getting on with Uni?

Lots of Love
Xxxx

Hi @Blakesmum92, I'm glad you are feeling as able as you can be to go and collect her ashes. I'll be thinking of you on Friday for sure. Hopefully although the emotions will be very present it will also be able to give you some peace as I am sure it has been a weight knowing they need to be collected.

So funny the same thing has happened! How will you feel if you are pregnant? When I saw a faintly positive test I felt really happy. I don't think my partner would feel the same way though. Like you, we haven't spoken of James in weeks and barely do. We definitely are processing things differently. I know my partner almost feels uncomfortable referring to him as James as it makes the loss more 'real'. I think he copes by minimising it in some ways. I understand it but I don't think it is working for me and helping me cope. I think the wobbles have also felt more intense because he has been soo busy with work and it is a stressful time so I don't want to add more to it. But not telling him that I obsessively took two pregnancy tests a day for 4 days feels like a secret now which is weird. It is also hard to feel like he wouldn't be happy if we did get pregnant again.

Uni is slowing down, I have 3 more assignments to get done in the next few weeks and then I am on summer break. I have been keeping busy in the garden and with Percy obviously. With there being two sets of grandparents in the area I feel the pressure to let them have her once a week (there is some definite guilt tripping if they don't look after her once a week) but that will leave me with two days of not really having much to do other than house work once I finish uni. But again my partner's parents know nothing of the situation so I'm sure they would just think I was being possessive of Percy if I declined every offer for them to babysit.

I hope you are enjoying your weekend, it is nice and sunny here at least!
xx

Hi @charlieecol, mentally I think we are ready to get her ashes, really is just the fear of them emotions hanging on us, especially with being back at work. I know! How strange, I won’t tell him either when I go to take tests, I think he wouldn’t want to know right away because once it’s confirmed the worry will start all over again. I think I will be really happy but also highly nervous, the loss midwife that looked after us at the start told us that if I fall pregnant again to contact her and she will arrange my next booking in appointment and get me an early scan which is a lovely touch from the hospital, I think the likes of us who has been through it before the struggle of conceiving and carrying is just nerve wrecking. I remember when I was told at my 12 week scan that there was extra fluid and I was being referred I knew things weren’t straight forward for me, I had to go back to get bloods retaken and had to sit in the waiting room with women coming in and leaving smiling going through the happiest time of their lives, I really struggled with that and I think I will again I read somewhere that the next booking in appointment is mindful and helpful so I hope for us both that is the case. I get were your boyfriend is coming from, my boyfriend works for the civil service and he’s still off! They were extremely accommodating and give him weeks and weeks off, me unfortunately iv been back for ages. When he has wobbles I find it hard to ‘join in’ because I’m worried it will knock how far I have come, men are also funny beings, everything is hidden and feel they have to act strong, it could be a coping mechanism to get through work like me. Don’t think like that, I’m sure he would be delighted, I think the stress of what we went through is like a dark cloud of what lovely things are to come. Its definitely ruined it for me, if I found out I was pregnant I don’t think I would tell him until my sickness started, that’s how crazy I am! I know come 9DPO it will be test galore haha.

Will be great to see the back of uni for a short while I’m sure you are looking forward to it.
Aww that’s lovely yous have been out in the garden, it really is the weather for it!

I’m sure it’s tough to make sure everyone is getting their fair share of Percy time including your time with her, it’s also nice that she has all these people that can’t seem to get enough of her, what a lucky wee girl. Maybe you should get your boyfriend to put a word in to lay off for a wee while as you have a lot on your plate? I love that one... lol

Now with lockdown easing at least we can get out of the house for a few hours now just to get our heads showered! I miss a good new look haul and even sitting somewhere for a coffee, Northern Ireland retail back to normal end of this week, bring on the retail therapy!

Let me know your results, will be right along side you! I will let you know mine

Good luck & Chat soon

Lots of love
Xxx

Hi @charlieecol

Hope you had a lovely bank holiday, just thought I would come on to say, I am a serial tester, could swore I could see lines when obviously there wasn’t, right up until my period showed up! All this does make you go loopy. I too didn’t tell my boyfriend, he would def think less of me if he knew how much I was testing. Collected Blake’s ashes on Friday too, going up to the crematorium brings back memories of my mum when she passed so that didn’t help. We have the ashes sitting on a shelf in spare room with a teddy until this house is sold then il go for the flower pot idea, was very hard def brought up some of the emotions of what we went through but I think we were stronger than I had imagined I would be. Now it seems back to trying again, which was stressful enough before hand hoping the ovulation strips help us this time around again like they did conceiving Blake.

Hope you and your family are keeping well

Lots of love

Xxx

Hey @Blakesmum92, I was thinking about you over the weekend and hoping everything was ok.

I’m glad you’ve got Blake’s ashes now and that you have a plan of honouring her. I can only imagine the emotions of going somewhere with so many painful memories attached. It’s all just so unlucky and unfair isn’t it?

We are honestly so in sync. I have three tests that have definite faint lines and about 15 that were negative but I was holding them up to the light to see some faint line. I was getting them back out of the bin and checking.. but yesterday my period showed up too. On the one hand I feel ok because it wouldn’t have been the best timing for me but on the other hand the thought of trying to get pregnant and possibly failing is awful.. but I know we need to be kind to ourselves, that’s pretty much the only thing we can control in this situation!!

I had my check up consultation with my dr today and she basically said that the likelihood of there being something wrong in subsequent pregnancies was very very low.
I also spoke to a really nice lady from the charity ‘Petals’ and I’m going to get 6 free sessions of counselling. It felt good to just verbalise things, I haven’t actually spoken about what happened with anyone other than my partner for two months. She said that she could tell that me keeping it a ‘secret’ was weighing me down and that I need to just decide on the language I want to use (I said how sometimes he’s James or ‘the baby’) and just let my sisters know that I don’t want them to try and fix anything or give me sympathy but just that it is helpful to actually be able to acknowledge the pain.

How are you feeling about your period arrival? Do you think you’ll try this month or more just not be careful and see what happens?

Chat soon xxxx

Hi @charlieecol

I was disappointed when it came, but we weren’t exactly trying when we dtd before I ovulated so it wasn’t a shock, but getting confirmation your not pregnant when I still technically should have been is still heartbreaking.
I think that’s us trying again from this month, I feel completely nervous now, I can’t really pinpoint nervous about what but once I’m pregnant again my mind will be going 100mph.

How did you feel when your period came?, have yous thought about when yous will want to start trying again?

We totally are! I felt consumed with knowing if I was or wasn’t and I kept squinting and imagining lines, but once my period came then my mind felt free to think about other things, it’s horrible isn’t it that it does this to you, i felt pretty crappy when my period came but was glad I didn’t have it consuming me knowing or not knowing, can’t imagine that would be any fun to deal with month in and month out. Yes you are totally right about being kind, I have started making some time for self care, taking the time to put my tan on, buy new clothes if I want, it really does make a difference.

It’s really reassuring to hear this from the doctors that the likelihood of it happening again to us is slim, they seemed to reassure me with this also at the hospital although at the time I don’t think anything could have reassured me lol.
Aww that’s so good you rang petals, I think it’s such a brave thing to do, I’m a coward, and always hide my emotions from everyone, it’s a bad habit really, I would be scared of just crumbling into a million pieces. How do you feel now you have spoken to her? Have you decided to tell your sisters? It’s such a big thing that happend to us and you deff need the support

Chat soon, lots of love xxx

Hi @Blakesmum92,

I'm with you with the feeling nervous to try again! I've never technically 'tried' before so when we do decide it's time I will be a wreck if it doesn't just happen straight away. And then that's just the beginning isn't it!! In fairness I was actually ok when my period arrived. It wouldn't have been the best timing and I am still really emotional. But I was relieved to see that my body is starting to get back to normal.

I still haven't told my sisters.. It's just so hard to find the words. I really don't feel like I can call her because I know I'll be crying before I even begin. But it feels a little wrong sending a text. I do know that I need to just tell someone because keeping it in all the time is hard and isolating.. But like I know you know, talking about it is just so difficult.

I've seen there's a drama on BBC tonight about tfmr in Northern Ireland, I wouldn't say I'm 'excited' to watch it but I'm so glad it has been made and is being aired. Hopefully some of the stigma around a tfmr will start to be readdressed.

xxx

I haven’t been through this OP, but only because I’m fortunate enough not to have been in your position.

I just wanted to say how sorry I am for what you’ve been through.

Hi @charlieecol, iv just been reading threw a few posts on this thread and come across yours which is very similar too me. Last year we decided after years to try for a baby, cut a very long story short, our little girl got diagnosed with Edwards syndrome at our 20weeks scan. No scans before that showed up anything wrong, although at my 12 week scan the horrible sonographer was horrible with me telling me I'd not drank enough and couldn't do the combined test. We had the amniocentesis which exactly what you said was the worst pain ever and it took them 4 attempts to do it, they also while doing the amniocentesis stopped her heart beat as I was 22weeks by this time and a high chance she could of been born alive and we decided we cudent put any baby threw the pain of that. We stayed in a lovly little bedsit at the hospital where we stayed with her for the full day and took lots of pics ect. We had a little funeral at the crematorium and got her ashes. This was last year in September. I don't think I will ever come to terms with losing our baby girl but I remind my self everyday we did what was right, not only had she Edwards syndrome, her hands and feet were turned inwards and hands stuck in front of her face. Also her heart only had 3 Chambers instead of 4 and were back to front. And her brain hadn't formed proply. I think of her every day still and I'm sure that will never go away.

Sorry to ramble on but with some positive news I'm currently 4 months pregnant, the doctors, nurses, midwifes, consultants are keeping a very close eye on me, iv had the combined tests and had come back low. The measurements on back of babies neck was 1.3mm I think. Everything looked OK on 12 weeks scan and baby was perfect size. I'm currently waiting for the 27th May where I see my consultant and he's going to do a scan on baby's heart, brain ect. I'm absolutely petrified that they will say somethings wrong it's somewhat stopping me from enjoying my pregnancy even tho I'm getting a nice bump now. I try to take care of my self as I work in care, hopefully I have my little rainbow baby in October 2021, I pray all the time and hope everything will be OK.

Thanks guys for listining to me ramble on. Feel free to inbox me xx

Hi @charlieecol, sorry I am only getting a chance to reply to you now, if I’m not working I’m sleeping just feel so bloody exhausted these days.

Yes I was so happy when my first period showed up, as you say just everything getting back to normal I think we deserve abit of “normal” now whatever that may be for us really.

I found it really hard to talk to any of my sisters over the phone after I just communicated via text because I wouldn’t have got the words out either, what about asking your mum to pass the message on for you? It’s hard when you don’t know what move is right but I’m sure you will over time when it’s not all so raw. I know none of my family understands the way the girls in here do so I do like to come on and vent in here I feel lighter after I have been here, it’s such a blessing it’s here because I don’t know where my head would be at if I didn’t have other women to talk to that had been through the same thing.

Yes I seen the drama and I really wanted to watch it, I wanted to see what way they portrayed our situation if you like and the other story lines seemed interesting... as I have said before takes a lot for my emotions to surface but holy Moses.. I watched that trailer and I just bawled... and that was me the rest of the night random weeping, that one little snippet set me off completely. Hopefully when I’m mentally stronger I can give it a go, did you manage to watch it? I agree I was glad it was made, it’s crazy to think if this had of happend to me a few years back I would have had to be travelling to have her and not at home, it’s so sad for them past women that had to go through not only that pain but in unfamiliar territory.

How have you been managing these days? Do you find petals has been helping you?

Chat soon, lots of love xxx

Hi @LozHAP35

Thank you for coming on and sharing your good news with us. Congratulations on your pregnancy I’m sure yous are over the moon.

I lost my wee girl in March to Edwards at nearly 18 weeks and my hearts still sore from it all.

How are you finding your pregnancy this time around? I feel I’m just going to be a bag of nerves.
Do they do anything differently for you? My loss midwife said that she would do my booking in appointment for me and give me early scans again when I do finally fall pregnant again.

Hope everything goes well for you, have fingers and toes crossed we will all have our rainbow babies soon enough

xxx

Hi @Blakesmum92, it's been 8months since we lost our lil girl and I think about her all the time, I'm always looking in her little box with all her things in. But they are precious memories.

Now I'm 16weeks I was thinking a few days ago that iv not had many appointments, I had one with my midwife at 8weeks, then my 12 week scan where I saw the midwife and then a doctor. I was told I'd have early reassurance scans but iv not had any as yet, and be refered to the rainbow clinic but none as yet. I see my midwife nxt Tuesday so I am going to ask her, I defo need the reassurance. I got told I'd be under the featel medical unit too. Tbh till your over 4 months and don't think they can check baby as baby is way too small.

Good luck with any future pregnancy and I hope everything goes OK for us all. X

Hi @LozHAP35, thank you for sharing with me. It breaks my heart that this was your first experience of pregnancy and labour. I feel grateful that James' complications were picked up at the 12 week scan, the thought of only finding out at 20 weeks is too much to bear. I'm glad you're getting well looked after now and I'll be thinking of you on the 27th - I hope your little rainbow babe is perfectly healthy, but the odds are now in favour so my Dr keeps telling me. Not that it takes away from the anxiety.

Hi @Blakesmum92, I completely understand about being a bit too exhausted to reply sometimes don't worry! I am so grateful for you and I know that we will both reply when we can.
I texted my oldest sister and told her about James. She replied with a really lovely message and I think it was definitely the right thing for her and I to text rather than call. I think she had a cry when she found out too. I think I've learnt from this that if I tell someone I definitely need to guide the narrative almost? She asked me if my partner's family is a carrier for Downs' and she obviously just isn't aware that in over 95% of cases it is just unlucky and cannot be helped. But it is so hard already feeling like I am broken somehow and then someone unknowingly also kind of adds a feeling of blame. If I tell my other sister I will just say that it was unlucky and not to do with genes to avoid it I think. I do feel slightly better but honestly it lifted the weight from my shoulders. But I suppose only time will help.

Yes I have to say I cried through great long parts of 'Three Families'. It really knocked me off balance for days, I don't think that there will ever be a time where it won't.
So I'm looking at two little pink lines on my ovulation test at the moment so I think you're probably doing the same too as we are so in sync! haha! Sending you lots of healthy conception vibes!! I do genuinely feel excited still about the thought of us both having another healthy baby which is really nice that it isn't all just panic.

Speak soon xxxx

Hi, I do have 2 other children which are perfectly fine. One is 15 and one is 11. But of a big gap in between this one but it dosent bother me. I'm looking forward too the 27th but also dreading it at the same time, that they say something bad. But have to keep on the posative side. Not long to wait now. I hope everyone else is future happy healthy babies with Yr conception. Sending pregnancy vibes

Hello everyone.

So sorry you have all been through this. I have found great comfort in reading your messages as I found out yesterday our baby more than likely has Edwards. I am being referred for a TFMR and I’m so incredibly scared of what will happen. I know it is the right decision, as baby has many conditions including a brain abnormality which will mean they will be physically and mentally disabled. As well as other issues. You never think it will happen to you do you? You hear about it but just think it’s always someone else. Just proves you are never guaranteed a healthy baby or pregnancy, and I’m only in my mid 20’s.

I must say I was shocked to hear you found labour to be really painful, as I feel like I have been told it won’t be that bad as baby is still small. (I’m 20 weeks). Do you get offered pain relief just like you would if you were full term?

It’s so sad, but I also realise I’m not alone in this and we’ll get through it eventually

xxx

@Els2612 I’m so so sorry to hear this but I am so glad you have found our safe little corner of the internet here. It’s a position that you never think you’ll find yourself in and it rocks your world when you do.

Ilabour is different for everyone and for me, birthing James at 16 weeks wasn’t painful for me. But I have heard from lots of women that it has been painful for them. In my experience some medical professionals can minimise what we experience with a TFMR. You are going to labour and have a baby and you will absolutely be entitled to pain medication if you want it. I also recommend taking a hot water bottle. I know what you are going through right now and my heart is absolutely with you. If you have an questions we will answer to the best of our knowledge with our experience. You definitely aren’t alone xxx

Thank you @charlieecol I really appreciate it. It’s been a shit journey that’s for sure with lots of ups and downs but at least we know now. I decided not to have an amniocentesis as it was so clear from the scans and the fetal medicine doctors that our baby was really poorly. I couldn’t bare the thought of an amniocentesis after finding out what we did. I decided we would just find out after with a PM.

Our baby has mostly all the markers for Edwards so we decided it is for the best although it’s so so sad to have to make that decision.

Thanks for that recommendation. Is there anything else you suggest taking? I’m expecting a call today from our local hospital and although I’m sure they will give me all the advice, there’s nothing quite like talking to someone who’s actually been through it. Do they recommend you stay overnight, or can you leave same day? xxx

@Els2612 Yes there is no point putting yourself through an unpleasant procedure if it isn't necessary. It is just so so shit and I'm just so sorry. Is this your first baby? Did you know things weren't right at your first scan?

Assuming there are no complications they are generally happy for you to leave hospital when you feel ready to in my experience. I had James and 2am and left at 9am.

In terms of practical things, hot water bottle, food, clothes that you are comfortable in, maternity pads. Literally anything that you can think of you be as physically comfortable as possible, take it. My waters broke whilst I was being sick (an unfortunate side effect of one of the drugs they give you) so I soaked my joggers, take spares just in case. My partner and I also spent a few hours watching line of duty whilst in early labour which was a happy distraction.

If you want to make memories, I'd ask your hospital if they provide a memory box (they should).

Do you know when you will be going into hospital to take your first dose of medication?

xxx

Thank you. Yes, our first baby. And kind of but also not really. We had our 12 week scan when I was actually only 11 weeks (my dates ended up going from ovulation rather than my period due to long cycles). The sonographer at the time said she thought the nuchal looked thickened but struggled to get a measurement because baby wasn’t cooperating. We were referred to a FMU but instead suggested that we just went back to our local hospital a week later to have another scan, as technically I was a bit early to be having the 12 week scan. I went back a week later and they said the measurement was 1.8mm so absolutely normal and nothing to worry about.

I had bloods done which came back as 1 in 600 for trisomy 13 & 18 but assured this was still ‘low chance’ and the chances would be higher because I had low PAPP-A levels. I wish I had questioned it more now but at the time didn’t think anything of it, as you would being a first pregnancy. Hindsight is a wonderful thing huh.

20 week scan showed some abnormalities, mainly with the brain and feet, so were referred to a FMU so they could have a closer look and this is where they found a list of markers for Edwards. (Sorry, bit of a story time there).

Thanks for the helpful list. I don’t know when I’ll be going in yet but I was advised it’ll most likely be soon because of gestational age. We only found out the news yesterday so it’s still sinking in.

xxx

Hi @charlieecol

Hope you and your family are keeping well, I feel these weeks are wizzing by me and your absolutely right, I’m just looking for those 2 ovulation lines, turns out I was high fertility for 6 days in a row before my peak, seems strange, maybe it’s because it hasn’t been too long from I was pregnant, not really sure. Now I’m right in the thick of the 2 week wait, trying not to think about it but you know a serial tester like me can’t keep her mits off. How are you finding it? I really hate this wait.. drives you mad but I suppose it’s something else to focus on isn’t it?. Work has been chaotic for me at the min, up from 6 and not finishing to 6 so I feel I hardly have the time to think about much else. Although I have a feeling suppressing will come back to bite me in the bum sooner than later.

I’m really glad you managed to tel your sister, I’m sure it does feel like a weight has been lifted for you it seems like her heart really went out to you too.. no one ever wants to be in our position.

I know what you mean about the blame feeling, my sister was saying oh during my pregnancy I was eating so healthy and doing this and that.. like as in, oh because your not doing those things it’s caused this problem. As you say it’s something that is just random and happens when sperm meets egg.. I got my back up with that so I understand how you feel.

Your so brave to watch that, I really struggled even with that clip but the actors in the clip looked like they carried it off well. I’m sure it brought up lots of raw emotion for you.

Sending BFP vibes to you too! I’m quite excited myself but this conceiving journey itself can be hectic with waiting and if it’s a no go then having to start all over again, just hope it’s all worth it in the end for us, good luck & chat soon.

Lots of love xxx

Hi @Els2612

So sorry you find yourself here, echoing the words of @charlieecol , it’s most certainly a safe place here , back in March I remember seeing her post and being relieved someone else was with me and I’m sure she felt the same, it’s such a painful time of uncertainty and heartbreak that you don’t really know if your coming or going.

Iabour for me was the cramping, it lasted for about 2 hours but they gave me dyamorphine and my goodness it was a life saver, they may offer you that if your struggling. Other than that pushing part wasn’t much pain as our wee Blake was nearly 18weeks and measured very small in scans.

I remember being told so much wishy washy information that I couldn’t think straight, I did go for an amino, but it really is personal choice, my wee girl did have edwards but apart from a extremely large cystic hygroma she didn’t have any other markers, 16 weeks they did find she only had 2 heart chambers but those were the only things really. The amino did hurt, to me was like a sharp jab, sore but over very quickly. Got the results 2/3 days later and Edwards it was so we had to say goodbye. Everyone handles the situation differently too, I remember me and my boyfriend so eager to get out of the hospital, they offered us to stay an extra night.. I know not everyone would be offered that with availability etc.. but we wish we had of stayed the extra day, only because the nurses were very caring and understood our situation, when we walked out those doors it was very different, probably could have done with an extra day to let it sink in, and probably to make sure we ate, as when we came home we didn’t eat for a few days.

I’m really sorry to hear this was your first pregnancy too, my wee girl was the same, doctors do say it’s incredibly rare to happen again, so with hope we all never have to go down this path again.

I will be thinking of you in the coming weeks, my heart really goes out to any woman that goes through this.

If you ever need a chat or just to offload, we are here.

Xxxx

Thank you all for posting your stories, it's helped me knowing I'm not alone in how I feel. Its my 2nd pregnancy and we were so excited. 12 week scan looked good, but I got a call few days later saying bloods indicated high risk for Downs. Booked in for the SAFE test and that also was bad news. Did the amnio last week and confirmed the Downs diagnosis. Amnio was not painful at all, just a bit uncomfortable when the needle went through the womb. We're now deciding between medical or surgical tfmr. I've been grieving from the time of the 1st phone call because I've just had such a strong gut feel about it. My partner has been wonderful with all the support even though he has been so much in shock at where we're at. Family is all supportive as we all agree it's the best decision for the baby and for everyone around. But it's really hard.

I'm inclined to the surgical procedure as it is quicker and requires less hospital time. I also have to think of my older child who often only wants his mummy for comfort at night