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

Thank you @Blakesmum92 ❤️

I had the call this afternoon to say I can go in tomorrow to have the first stage and then back in on Sunday to deliver. I’m 20 weeks now but baby is measuring small so more like 18/19 weeks. I don’t even know the gender as it was unidentifiable on all our scans - another marker for Edwards or Pataus apparently.

I was totally up for having the amniocentesis before our appointment, I think maybe because I still had some hope that they wouldn’t find anything else. It wasn’t until they pointed out so many problems that I just didn’t think it was worth it - we were told our baby was already very ‘poorly’. The only thing our baby doesn’t have wrong is any heart conditions (that they could tell anyway without an echocardiogram) - which they said was very very rare considering the other abnormalities. I was such a mess during our appointment I just couldn’t face an amnio.

That’s good to know about the hospital, I guess it’ll just depend how I feel on the day. I imagine I’ll want to leave ASAP but we’ll see.

Thanks for your help, it really does help talking to people who have been through it (even though no one should have to and it’s so so sad). I hope you’re both doing well.

xxxx

@Blakesmum92, wowow 6 days! Keeping my fingers crossed for you. The two week wait is haaaaard. And I completely understand the need to test - I did just manage to stop myself this morning though haha. I looked on a fertility calculator and it said I should test on 28th. Although.. chances are low as we didn't actually try and we did the deed 2 days before I was highly fertile so we will see! Hopefully work being busy will serve to keep your mind a little preoccupied (haha no it won't who am I kidding?). Yes, supressing is probably going to catch up at some point I'd say, I literally didn't have time to deal with my brother's passing as Percy was born the next day and I was living with my partners family so could hardly just walk around the house sobbing (which I wanted to). And now I feel like all those emotions are tied up with James. But, I feel a little stronger each day. I hope you do too.

It is really tough though isn't it? I absolutely dread the point of being pregnant again because I know that until the 20 week scan I'm just going to be half in and half out.. Really difficult to feel two very very different emotions about being pregnant simultaneously.

Good news though, I submitted my last uni assignment today and I really don't know how but all of the assignments for this semester so far have come back with high marks (?!) I don't remember submitting anything, I literally remember laying in bed crying and that is about it.

xxx

@Els2612 It is just such a shit situation and it seems as if you've been messed around so much too. It just isn't fair and I am sorry this is your first baby. We are all here with you and thinking of you

xxx

@TicklishTiger, our experience seems almost identical. James was my second pregnancy too and he also had DS. I am really glad to hear that you feel supported by your family, that is so important that you have a safe space. And your partner sounds wonderful too! I do completely understand the feeling of grieving before having a proper diagnosis. After my first ultrasound I called my partner and told him that I think our baby has DS, I just knew that's what it was. And in all honesty I started to say goodbye at that point. The weeks waiting having more scans and CVS then waiting for results, I just did not want to be pregnant anymore.

I know that I have felt a lot of stigma attached to having a tfmr for DS, I got a lot of leaflets about being 'positive about DS' and for support groups but I knew in my heart that it just wasn't the life I wanted. I think because our particular diagnosis at 16 weeks didn't come with any other physical complications so it wasn't considered 'fatal'.

Where is your head at about medical/surgical? I asked for a surgical tfmr initially and wanted to be as removed from the whole situation as possible. I think that a lot of women feel that way. But my consultant spoke to me and basically said the risk of infection is lower with a medical tfmr so I decided that's the route I would take. I really really didn't want to, not at all. But now, I am glad I did.

We are all here for you xxx

I know what you mean about get it over with than prolonging the heartbreak.
I'm thinking of surgical only because logistically, it's quicker and easier to organise. And I can't bear the idea of going through labour and not having a healthy alive baby at the end of it. Also, with the medical procedure, if everything doesn't get cleared naturally, then you still need the surgical procedure.
I'm still waiting for the doctors to confirm that they can proceed because I also have fibroids. NHS hospitals here seem to be all still in covid protocols and referred surgical procedures to BPAS and MSI. They are hesitant to do anything complex in their clinic as anything that goes wrong will have to be rushed to an NHS hospital. So, I feel like I'm having to jump through more bureaucratic hoops than I really should.

@TicklishTiger, absolutely you know what’s best for you. Had my consultant not said anything I would have definitely had a surgical tfmr despite that fact it was logistically much harder. My local hospital (still a 50 minute drive away) doesn’t do them past 13 weeks so I would have had to travel to a different hospital.

Emma who runs an Instagram account called tfmrmamas had a surgical one and I’m sure she would be happy to answer any questions.

God I know. Like this isn’t already shit enough, the added covid aspect just isn’t not needed!

@charlieecol & @Blakesmum92, if you don’t mind, can I ask how you told people/friends/social media the news you weren’t continuing the pregnancy? I know it seems like a really ridiculous thing to think about considering the circumstances. However we did post on social media when I was 14 weeks announcing the pregnancy. My biggest fear is bumping into people that might ask me questions if they don’t know what’s going on (I mean, why would they). I just don’t know what to do. Any advice would be greatly appreciated xx

@Els2612 gosh I really feel for you. This just isn’t how it should be. I know @Blakesmum92 doesn’t have social media and I didn’t tell anyone at all I was pregnant so we didn’t have to announce the news. The only advice I can give is that you should give a little or as much information as you feel comfortable with. There is absolutely no shame in what is happening, it’s just a tragic situation. Something like ‘our baby was too poorly to stay’ gets the message across without going into any details if you don’t want to share them.

Sorry I couldn’t be of any more use xxx

@Els2612 also with my few friends and family I told, I told them everything via text and they were 100% supportive and sensitive. I sobbed down the phone to my mum - I was telling her I was pregnant and that I wasn’t going to be for much longer at the same time.

Thank you @charlieecol

To be honest, the ‘poorly’ scenario is how the doctors at the FMU told us the news and it did sound much more comforting. I have told a few friends and they were really lovely and supportive. I don’t think anyone can comment unless they’ve been through it - the best thing anyone can do is just support you in your choice. I really regret posting on social media, I definitely think I would play it differently if we are lucky enough to get pregnant again. Everyone at work knew as well, which is going to be hell.

Did you get a memory box/photos taken of James? Also, did you do a cremation/burial? (if you don’t mind me asking). These were all questions we were asked today and I just don’t know what to do. I don’t want to regret not doing anything so I just feel like we need to so I don’t have regrets down the line. 😞

@Els2612 you didn’t expect anything to go wrong, none of us did but now unfortunately I think we will feel unsafe in pregnancy forever more!

Absolutely. No one has a right to comment with anything other than support. Genuinely though, I wouldn’t overthink it and build it up too much, I’d just be brief and click send and maybe only look at the comments of love and support you’ll get when you feel strong enough.

I have two tiny footprints but he was just too small and delicate to get hand prints. I have literally two photos of him on my phone and I don’t have one of him and I together. In a way I regret that but at the same time he was just so small that I personally didn’t feel a maternal draw to him in the ways the other women do. I was a bit scared and overwhelmed I think. Again, such a personal choice. We opted to take him away with us when we left the hospital and we went to my mum’s house, she’s got a lovely big and well tended garden with a little memorial section where my grandmas and brothers ashes are so we buried James there with a teddy and blanked from the memory box. It was all a really rushed decision but I’m glad I didn’t have to go back to the hospital to collect his ashes. However I know one day that the house won’t be in our family and I won’t be able to access that special place. Lots of midwives suggest putting ashes in a flower pot so that you can always have it with you. I suppose if you have your babe cremated you can decide in time how you want to honour them. I will say that if you do decide to leave the hospital with your baby then ask if they provide something to transport them in. My poor partner after such a long night had to go to Tesco’s and pick a container to transport James in and I know he is still angry/upset about that.

I hope you’re coping as best you can be.
Xxx

Hi @Els2612
I'm so so sorry that your going to have to go threw similar too me, but I'm glad you have come on here for support, I cudent have got threw it without the girls on here. I found out at 20week my little girl had Edwards syndrome, but same as you 12week scan they cudent do the measurement. I did have the amniocentesis but to me it was the right thing to do as it confirmed to me 100 percent. When I went in after takeing the tablets, they told me (which they never did before) that as I was past 20weeks the baby could possibly be born alive, although they said she could live for few minuits to further I was not taking that chance for our lil girl to go threw such pain. So I had another amnio to inject potassium into her heart to stop her heat beat. It was and still is the worst day of my life, I had to stay in hospital after that untill I had her, I had to have 3 pesserys to start labour I think they were 3 hours apart. The 3rd one worked but like some have said the labour to me was just like my other 2 children. I spent the full day with her taking pics and holding her and they said take as long as u like. Some people don't want to see baby, some ppl do it's Yr choice. You have alot of decisions to make.

Were all here for you please if there's anything you want to ask please feel free to inbox me,

I'm currently 18weeks pregnant and I'm totaly terrified of it happening again, I have my scan on Thursday with my consultant to check baby all over. Its so scary.

Anyway you take care of your self and we're here for you. Thinking of you and huge hugs to you. Xx

Hi @Els2612

Sorry I haven’t been on, these past few weeks have been a whirlwind for me. How are you managing? My heart really feels for you during this time, I still get a tightness in my chest when I think about me in March, I hope you are getting by the best you can.

Yes @charlieecol is right I don’t have social media so I can’t give any advice there, I did tell all my work colleagues tho and family, that was a horrible thing to go back to, but I did ask my manager to inform them of what happend and not to mention it to me as it was still very raw to be honest it’s still hard to talk about. I feel incredibly lucky having these girls here, I really don’t know where my mind would have been right now without speaking to other women that had been through the same thing.

I still get anxiety when I’m out in case there is someone who doesn’t know and asks me, but I think that’s my own head playing tricks.

Any wobbles or bad days I always found coming here was an understanding place to be, I hope you do too.

Chat soon xxx

Hi everyone
I just wanted to thank you all for posting/sharing your stories.
We sadly went through a TFMR today and I have found comfort in knowing we are not alone. X

I didn't want to post but felt I couldn't leave. You're the only people who know exactly what I'm going through. I go back in two days to take the Misoprostol to induce labour. I am 12+3 weeks pregnant. My first pregnancy after nearly 7 years trying. The look on my husband's face when we had that scan 6 days ago! He was so happy - we were both so giddy! Then the silence whilst she clicked and moved and measured and re-measured. The mood changed and we knew it wasn't good. NT of 6.5mm. Umbilical cord herniated. Heart defect detected. With the blood tests we were given a diagnosis of Trisomy 18 Edward's syndrome. We discussed the possible outcomes before the scan and knew if chromosomal abnormalities were detected, we didn't want the baby or us to suffer so we knew a tfmr was what we'd opt for. Doesn't make it any easier though. It's just so sad. So, so heart-achingly sad. Now I've got to get through the physical side of it. Thank you for sharing your stories. I researched the odds - a 3 in 10,000 chance of this happening. I didn't think I'd find anyone who has gone through this too, who is feeling or has felt the same way I am right now.

I just want to say that I think you were both incredibly brave and loving to let your babies go and not suffer.

I can totally relate I have had to have 2 TFMR's for a different chromosomal abnormality (if the baby survived it would suffer for it's very short life!) but 1 of these also had trisomy 21 as well as the other abnormality- the placenta got stuck in my cervix on my second and I almost bled out was rushed to theatre for an op and needed blood transfusions! My DH and doctor thought they weren't going to be able to stop the bleeding so I may need a hysterectomy or they may lose me! In the end they managed to slow it down enough so they could operate to remove the placenta.
Once you have a baby with T21 you have a 1 in 100 chance of having another -I have been pregnant twice since mine both were fine!1 had the other chromosomal abnormality so had to lose him but since I've had my little rainbow baby and though I bled a lot everything else went ok!