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Previous TFMR, currently 13+6

18 replies

Treaclepie19 · 07/04/2020 09:14

Hi all,
I spent a lot of time on here in 2018. We had bad news at our 12 week scan back in September 2018 as baby had a high NT (5.3). The NIPT came back fine. Scans all looked fine. We decided to see how things went. At 18 weeks there was a glimmer of a heart issue so we had an amnio and that came back to say baby had a chromosomal problem. (Mosaic deletions of chromosome 2) and we had a TFMR at 22+4.

Back to now, I'm 13+6 and our NT was good (1.7) combined screening came back fine. So we've decided to just see how the 20 week scan goes rather than rush to an amnio.
I just can't shake the worry something is wrong.
Has anyone else been in this situation?

I'm wishing it had been something more common in a way so we could have had the NIPT.

Just to say, they did test both me and my DH and there is no reason this should happen again. No extra risk and our chromosomes are normal.

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elcie1980 · 07/04/2020 18:36

Good luck with your new pregnancy

I am currently waiting to get pregnant after. A TFMR in November 19.
Sending you social distancing hugs and thoughts

Laura

Treaclepie19 · 07/04/2020 18:51

Thank you @elcie1980
So sorry for your loss and I hope you have a baby in your arms very soon Flowers

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Marphise · 17/04/2020 22:20

Hi ! I haven't been in your situation, but I just wanted to say that worrying that something may be wrong is fairly normal. Your anxiety doesn't mean that anything is wrong, it just means you're a parent and you're scared for your baby. Perfectly natural.

So far everything's been fine for me but I still worry. I worry when baby kicks. I worry when he doesn't kick. I worry that something may happen during the birth. I wonder if there could be an undetected issue.

I worry about all this and I didn't even have a tfmr (though I did have a miscarriage).

The only thing that helps is focusing on other things as much as I can so that I don't spend as much time imagining worst-case scenarios !

Fingers crossed for your baby, remember the odds are in your favour.

Treaclepie19 · 17/04/2020 22:54

Thank you @Marphise Smile
Its really hard because they can't tell us it will be fine without an amnio but there doesn't seem to be any extra need for one.
We have a 4 year old too so I'm just trying to remind myself things can go right.
I hope all goes well for you too, pregnancy is such a worrying time. Especially after a loss.
This is my 4th pregnancy because my first was a miscarriage and I'm definitely done after this. I can't deal with anymore worry about pregnancy!

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Rubyroost · 26/04/2020 18:54

I had a nipt test and tested for main 3 chromosomal issues and the sex chromosomes. I had tfmr prior to this at 13. 5 weeks. It was t21. I also had 20 week scan but no amnio. I paid for an extra private scan with a fetal medicine specialist to put my mind at ease. But developed complications later on in pregnancy. Gest diabetes, polyhydramnios. Baby had to be delivered early by C section at 37 weeks, but he's absolutely fine. The pregnancy was pretty anxiety inducing, but I got there in the 2nd. Good luck to you x

Rubyroost · 26/04/2020 18:54

End

Rubyroost · 26/04/2020 18:56

@Treaclepie19 this was my fifth pregnancy and I also have. Two year old toddler. I'm also done.

Kangaroo77 · 27/04/2020 13:04

Hi @Treaclepie19 congrats on your pregnancy. I understand where you are coming from as I have been in the same situation as you and it is anxiety inducing!

My first baby had T13 diagnosed after an amnio at 17 weeks. I terminated at 18.5 weeks and it was a massive shock. I fell pregnant again several months later and could hardly enjoy it. I delivered a healthy baby at 41 weeks, although she did need some NICU care at the very beginning, She’s 6 now and a right terror! haha. I had another successful pregnancy 2 years later that resulted another daughter. They’re both 4 and 6 now.

I met a new partner after their dad left, long story, anyway all is fine and well and we decided after 3 years together to try for our own child, a baby to cement our weird and wonderful blended existence. I came off the impact in October 2019 and fell pregnant straight away [cue shock]. We were delighted. The 12 week scan was fine, we told everyone the great news, including my children and then everything went wrong with the bloods. Sadly the baby was diagnosed at 16 weeks with T9, very rare! Ugh.

So I had a termination last month and I am now recovering well. We are definitely going to try again because like you, I have had healthy children before. I was told both diagnoses were flukes/ bad luck which sucks, but also it means they were random and there is every chance it will work out again next time.

It sounds like you have gotten through the worst, to 12 weeks and your nuchal measurement is excellent! I\m sure once you hit the 20 week scan it will be easier, I remember it was for me with my first successful pregnancy. XXXX

Rubyroost · 27/04/2020 14:02

@Kangaroo77 that sounds really tough for it to happen twice, but then I suppose its just you carried your baby longer as most people would have miscarried. I always think that if every miscarriage was tested we'd find out about a lot more chromosomal abnormalities. I miscarried the cycle before conceiving this one, thankfully my body realised it was not a viable egg.
Good luck on your mental recovery, its really hard however brave we try and be. And good luck on cobcieving another @Kangaroo77 @Treaclepie19

Treaclepie19 · 27/04/2020 14:06

Thank you @Rubyroost and @Kangaroo77 for sharing your experiences ❤
It's really tough.
Im trying to tell myself that genetically there is no reason for the same to happen again but I'm unsure whether not having an amnio is a bad choice.
Im 17 weeks on Wednesday and have a scan on Monday so going to see how that goes and go from there.

I have a 4 year old and with him once the scans were OK we didn't even question it so I'm trying to remember that.

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Rubyroost · 27/04/2020 18:10

I had a private scan at 16 weeks and another at 20 weeks. The anomaly was done by a fetal medicine specialist and it reasurred me that I had two 20 week scans as I felt that less could be missed with two separate scans, esp one done by a fetal medicine specialist.

My anxiety was less between 11 and 28 weeks as I had results from nipt and a scan around 11 weeks which was reassuring and then two at 20. However, because I was 40/41 I also had growth scans on NHS from 28 weeks onwards. This led to. My anxiety increasing as baby's growth went off the charts at 32 weeks and was at top of graph at 28. It led me questioning why his head and abdomen were measuring ahead. Was there something wrong with him etc etc? Midwives reassured me it was within the realms on normal. Then at 32 weeks the measurements showed his head and abdomen were way off charts and he was measuring 5 weeks ahead. Est fetal weight 6lb 5!!! Also that I had polyhydramnios... Excess fluid. I was diagnosed with gest diabetes. This was quickly controlled by diet and medication but the diabetes Dr and my consuktant both said it wasn't the diabetes that led to big baby or the poly as it was fairly mild and I'd got it under control so easily. Of course I googled and found all sorts of things.. There are syndromes where babies have large heads... Macrosomia and in some cases polyhydramnios can be due to birth defects and syndromes but in 60 percent if cases it is idiopathic (no known cause). Anyhow I spent the last part of my pregnancy on a strict low carb diet and worrying there would be something wrong with my baby. I googled like crazy and was so anxious, I'd convinced myself all was not well. Anyhow, baby had to come out early at 37 weeks... Weighed 6lb 15 oz 🙄 and so far I think he is perfect and I'm in love ❤️
Moral of the story... God I know how hard it is not to be anxious, but please don't let it get out of control like I did.

Rubyroost · 27/04/2020 18:16

Also I think my NT was 5.8 when I had my termination, the fact that this is now fine is a key indicator. I think that would be up if there was a chromosomal issue? I can see why you would not want an amnio. I also would not feel comfortable having one with a good NT as the risks don't seem worth it. There's also a lot they can see on 12 week scan the fetal medicine specialist told me at 10.5 weeks that this was a very different baby to the baby she had seen at 13 weeks when I had my tfmr. Coincidentally I had seen her privately with my firstborn for an extra 20 week scan and then it was her at the nhs hospital they sent me to for a second scan and a cvs when they had seen hydrops at 12 week scan.

Treaclepie19 · 27/04/2020 19:09

@Rubyroost our baby with the chromosomal problem had a nuchal of 5.3mm so very obvious. I thought the same thing but apparently the nuchal can be fine and still have a problem so its made me nervous again 😩

There weren't any other really obvious signs in scans with him so I'm so scared of something being missed. I'll see what they say at fetal medicine when I go Monday 😊

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Rubyroost · 27/04/2020 20:19

I see what you're saying @Treaclepie19 it's worrying. And I too worried that they missed something on scan even though I hadnt experienced it like you. So I totally get your worry. Try to remember that this is a totally different pregnancy and unlikely to happen again, and occur in exactly the same way etc. Good luck with fetal medicine. X

Treaclepie19 · 27/04/2020 20:23

@Rubyroost Yeah you're so right. The chance of it happening once was so ridiculously low so twice just shouldn't happen. Thank you, hopefully all will be fine 🤞

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Balajake · 27/04/2020 22:39

Can’t say I’m surprised to feel this way after what you went through, I know I’m gonna be exactly the same. It’s gonna be ok though @Treaclepie19 I just know it is. Take each day as it comes.

orlarose · 27/04/2020 23:55

I haven't been in your position but first baby had markers on 20 week scan, no nuchal measurements back then. Went through fetal medicine and thankfully she's okay now. I was an absolute bag of nerves then with DC2, I think the first words I said to the sonographer at the 20 week scan was please tell me straight away if there's something wrong (as opposed to awkward silence and 2nd opinion the first time). But this is a different baby so things can be different to the first time. Best of luck and sorry for your loss.

Also just to add, after DC1 I became obsessed with keeping her safe, from germs mainly. If you feel like your anxiety gets out of control then seek help, I suffered in silence and it nearly broke my marriage.

Treaclepie19 · 28/04/2020 09:37

Thank you @Balajake ❤ I hope so.

@orlarose I'm glad all is okay Flowers
Yeah I struggle with OCD and anxiety anyway so it is a challenge 😔

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