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After TFMR

(18 Posts)
GandTisgoodforme Tue 11-Dec-18 14:09:16

Hello all,

Wish I wasn’t posting here, but here I am.
We had to let our little boy go at 14 weeks pregnant around 6 weeks ago, as he had chromosome abnormalities and signs that he wasn’t well physically. It was my first and very longed for pregnancy, and took us 3 years to get him. 😪, so it wasn’t a decision that was made lightly at all.
I’m still grieving I think, and perhaps at the phase where questions are floating around my head...

Did anyone else under 30 years old have really high risk blood results (ie. mine was 1:5 for Edwards, 1:5 for Patau and 1:19 for Down syndrome) ? I am 27, and no one ever really explained why this was. My boy’s NT was 5.2mm so probably factored into the result. Is it just pure chance? I spoke to my GP about it a few days ago and she couldn’t say.

Did anyone have any further testing post TFMR? It was something the hospital mentioned but haven’t contacted us since.

After the CVS result, they did a low scale karyotype on baby but I never heard anything back from it...

Any experiences/advice would be really appreciated..

tenbob Tue 11-Dec-18 14:51:46

I'm so sorry about your loss flowers

It might vary between hospitals, but we received a letter offering a follow-up appointment about 6 weeks after losing the baby

At the appointment, they doctor went through the test results (we had signed forms at the time consenting to tissue sampling etc) and explained the chances of it reoccurring in a future pregnancy
They also confirmed it wasn't a genetic issue, but I think if it had been, they would have then referred us on for genetic tests

We were also given the details of a couple of charities that offered counselling services, and a copy of a letter sent to my GP which said for all future pregnancies, I had to have an initial scan at 10 weeks, plus extra scans at 16 and 24 weeks

I went on to have a healthy pregnancy afterwards, and really hope you do too

All maternity units have a specialist bereavement midwife so it might be worth speaking to them to find out what the process is for your hospital

Wishful888 Wed 12-Dec-18 14:31:58

Hi GandTisgoodforme, very sorry this has happened to you. If it were me I’d go back to the unit and ask for a further meeting to discuss. The blood results should be fully explained to you. You can also request further testing on you and your Partner.
I’m not too much older than you (33) and although my odds were better, (1-111 for DS only) the very sad news & outcome was the same. I am in just in so much shock this has happened to us & asked the consultant the same thing you are asking - is it pure chance? He told us in 95% of cases, yes. My babies NT is 3.5mm (on the borderline for normal) but the higher it reads, the more it will affect the odds. Obviously then combined with age, bloods.

I hope this helps & good luck with everything moving forward, I know how hard it is xx

GandTisgoodforme Sun 16-Dec-18 19:22:12

Thanks for your responses... and sorry you’ve been through all of this as well. 😔
I’ve managed to get an appointment for the 14th Jan with the consultant that dealt with us during the bad results and saying goodbye to baby. Hopefully I’ll get some answers then... as awful as it sounds and I’d never wish these circumstances on anyone, but I’m glad I’m not alone with having these questions in my mind..

I’m pleased extra scanning might be an option for future pregnancies. Problem is, I’m terrified of scans now as it was me that saw the fluid on my babies neck during a reassurance scan before the dating scan, and none of the midwives believed me when I told them, so I have no confidence in anyone now. Hopefully it’ll ease with time!

I hope you all have a lovely Christmas (as much as you can) and look after yourselves xx

Wishful888 Sun 16-Dec-18 20:29:14

Good luck with your appointment Hun. It will be good to start a new year with the view that you’re doing all you can to get some answers. It will help you move forward, whatever the answers may be.

You could always go elsewhere for future scans, privately or otherwise, if you have reduced confidence in that particular department. It’s understandable. I do think that the NHS have to be extra careful with future care for people who have had affected pregnancies - offering experienced sonographers etc. I completely relate to your fear as I too have it. I was so anxious about the dating scan and then the memories I have of one of the worst scenarios unravelling after we set foot in that room, still haunt me. It’s something we’ll have to face head on if we want to try again, but for now just focus on the positives if you can.
Take Care & do let us know how you get on.
Some of the forum talk makes me more anxious but at the same time, some stuff gives me hope things can turn out ok after bad experiences .

iamloading Tue 18-Dec-18 12:22:55

Just wanted to send hugs. I had to tmfr at 26 weeks due to severe brain abnormalities only seen at the 20 week scan. It half killed me and it had taken 2 years to fall pregnant. We had all the follow up tests which confirmed that it wasn't genetic or age related (32 at the time.) Anyway just as a story of hope my 4 month old is fast asleep beside me as I type this. I had scans every 3-4 weeks through the pregnancy which I felt sick every time. But it was fine. In my heart I will always have two children, and will always miss her big sister. So sorry that you are going through this x

Wishful888 Thu 20-Dec-18 20:25:20

Thank you iamloading , I’m so sorry for your loss I can’t imagine the pain you have gone through. I’m also so happy it worked out for you in time, gives me hope these things truly are just unlucky, not our fault and it isn’t necessarily going to reoccur x

marajade12 Sun 13-Jan-19 16:10:30

Hi op and others, sorry you have all been through this 💐

I had to tfmr last year at 17 weeks due to heart defects that weren’t compatible with life. It was the worst thing I have ever been through though time does heal. After a two month wait for autopsy and genetic results we had a chat with the consultant and he said the condition was not genetic and highly unlikely to reoccurr though we have a very slightly elevated risk of heart defects of any type reoccurring. The risk of the original condition was 1:10,000 risk.

I am now 10 weeks pregnant with rainbow baby and keeping everything crossed it will be ok this time.

GandTisgoodforme Sat 19-Jan-19 21:31:34

Hi all,

Thanks again for your helpful and lovely posts.... I hope you all had a decent christmas period.

I just thought I’d let you know that we had a follow up appointment with the obstetrician, and they basically said that it was pure bad luck that our baby had a chromosome abnormality, and we are now on the general ‘1:100’ odds risk of it happening again. No further tests were discussed. Our GP has offered a further screen on myself and my partner if we felt we needed it in order to try again another time. The obstetrician said he would scan me at 8 weeks, 10 weeks and 12 weeks in a future pregnancy, at the fetal medicine unit, but if all was well at that point I would be considered a normal low risk pregnancy. He also discussed a NIPT, as chances are by the end of this year our CCG may provide them free to couples who have had a chromosome issue in a previous pregnancy... but if not, I’ll happily pay for one.

To top it off, I have however been left 11 weeks with retained placenta fragments, as the hospital kept telling me it was a period as my HCG was below 5. So I had to have an evacuation of retained products on Tuesday, which was lovely as they forgot to give me the pessary beforehand, then kept me in the room that I delivered my son in, which was horrific! Just so glad it’s all over, and can try and adjust to life around this horrible situation.

I hope you are all doing okay, I really feel for anyone whose been in this horrible situation. flowers

Wishful888 Mon 21-Jan-19 18:53:10

GandTisgoodforme, I’m so glad your follow up was not only helpful but positive news. Sorry you had to go through a procedure for retained products, that’s awful. Doesn’t sound like the hospital was too sensitive to your needs. I guess they are completely desensitised to the emotion, but that doesn’t help us. At least you can move forward now without any fears over your health .
We’ve got our follow up on 6 Feb. I am dreading it. It’s the day of our baby’s cremation too :-(
Keep your fingers crossed for us.

GandTisgoodforme Fri 25-Jan-19 06:55:16

Thank you Wishful, it’s been a very odd 3 months really... just glad all the appointments and physical health stuff is over with.
Oh goodness, I’m sorry to hear that your follow up is on the same date as your baby’s cremation sad, I’ll be thinking of you & I wish you the best of luck with the appointment flowers.. (let us know how you get on, but only if you want to smile)

Take care

Wishful888 Wed 06-Feb-19 12:37:55

GandTisgoodforme hi,
We had the follow up & it was positive news (for a change) , in that there’s no evidence that it is genetic or predisposed. We Had a helpful chat with consultant about the future, what can be offered at our hospital & the statistics for reoccurrence & I do feel a little more reassured & less fearful.
I hope you are getting on okay xx

GandTisgoodforme Wed 06-Mar-19 16:09:59

Hi wishful!
Sorry for the late reply.
I am pleased to hear your consultant was helpful. I spoke to my GP last week about the myriad of fertility issues I have and the worry of trying again. I don’t want another 3.5+ years of disappointment.
Just terrified I won’t get pregnant again.. it’s really eating away at me. It’s been almost 5 months post TFMR and I’m emotionally drained, just wish I could have answers. I’m just so sad that a lot of people around me are due almost the same time as I would’ve been with my little boy, and they are all doing fine.
All I can say is that I must’ve been a right shit in a previous life confused....

Hope you’re well xx

Wishful888 Wed 06-Mar-19 20:24:54

Hi GandTisgoodforme

I hope you're ok, you sound a bit low. I know it's hard to feel hopeful in our circumstances going forward TTC & especially if you have some issues. What did your dr say ? The reality is you have fallen pregnant before, so there is reason to be hopeful that you would fall pregnant again when/if you feel ready to try.

If it makes you feel any better, I also am finding everyone around me is announcing their happy news. I have two friends due in June, the very same week as I was, it just seems exceptionally cruel to have to observe it all & makes me feel very angry & resentful & bleak. I feel like I'm going mad some days with it & like this loss has changed me into a horrible person :-(

My sister bought me a book about dealing with grief,I'll let you know if it brings any comfort. In the meantime please feel free to PM me if you want to let off steam as sounds like we may be riding a similar wave.


Treaclepie19 Thu 25-Apr-19 16:53:42

Hi all. I'm really sorry for your losses ❤
We lost our little boy in December and I'm struggling. He should've been born a week and a half ago.

GandTisgoodforme Thu 25-Apr-19 20:19:11

Hi Treacle 🙋🏻‍♀️

I’m so sorry to hear you lost your little boy in December.. 😥, I lost my little boy end of October... he should’ve been with us this week coming.

Be kind to yourself, it’s so so hard - a bloody awful and cruel time to be honest... it’s a rough old road. If you ever need to vent or share your thoughts/feelings, you’re always welcome to do so here, anytime.. thinking of you🌻 xxx

Treaclepie19 Thu 25-Apr-19 21:27:49

Thank you smile
It's really rough isn't it? I don't know where my head is half the time. Everything feels really uncertain and I don't know what I'm doing with my life. Feels a bit like I'm in limbo even though he's gone.

We made sure to have a family day on his due date. It did help a little.

MummyBearBoo Wed 05-Jun-19 08:33:48

So sorry for your loss OP xx
I have to have CVS every time I am pregnant coz I have a genetic condition, which if the baby has would make them either incompatible with life or suffer significantly if they do survive! There is a 50/50 chance of it being passed on coz it depends which chromosome 19 my egg has! My first pregnancy I got a beautiful daughter which I am so grateful for! Second time I was pregnant with a little boy but he had downs syndrome and the genetic condition and I had to lose him at 12 weeks through medical TFMR which was the most traumatic experience of my life I had every adverse side affect they warn you about, it took 7 hours and 4 doses I could feel my body fighting it, unlike pregnancy it feels so unnatural! I had complications afterwards too but I'm out of the otherside now!
All I can say is give yourself time to grieve time is a great healer, I started to feel better finally a few months ago (I had the TFMR in Dec 2017) so much so that we were ready to try again and I'm 8 weeks pregnant but absolutely terrified! I have my dating scan next week then CVS 2 weeks later - I'm 34 and due to my age and having a previous baby with Downs that chance is higher and I still have the 50/50 chance of passing the faulty gene on! I really hope this baby is ok but so far my first trimester is more like my second pregnancy than my first (which was a breeze unlike this one and the last one where I feel sick all day!) xx

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