Pregnant after Triploidy loss

[Numberoneworrier]

Hello,

just wondered if anyone has been through something similar? I lost a baby boy due to Triploidy syndrome at 16 weeks in January.

I am now pregnant just over 8 weeks, I’m getting scans every 10 days and being really well looked after but I just want some positivity and it’s really rare it will happen again.

if anyone has any positive stories would be amazing

thank you
x

@Numberoneworrier I know this thread has been quiet a while, but wanted to share that I also lost my first baby to Triploidy syndrome in January. He was 15 weeks along.

I can imaging pregnancy after triploidy is very stressful, I’ve been anxious about the possibility of it and I’m not even pregnant.

I’m healthcare professional and was so frustrated by the lack of information that was available to me during my pregnancy - in the end I turned myself into an mini-expert on triploidy by reading every medical journal article I could find on the subject. Reading stories on mumsnet of other woman’s experiences also warned me I was probably carrying a triploidy baby long before the genetic testing came back so thank you to those mums who bravely shared their stories.

It is rare for it to happen more than once according to the literature, but doctors are often vague about this as unfortunately they have not been doing huge amounts of research on this over the years (woman’s health generally just doesn’t seem to get funded properly). Hopefully future women in our position will get more concrete reassurance.

I really hope your 12 week scan has gone/goes ok; if you were like me there were lots of warning signs things were not right by the start of second trimester.

Unfortunately my miscarriage was complicated by the discovery of a dermoid cyst which grew quite dramatically so no TTC for me this summer! I’ve just had surgery for it so I hope to be able to share some positive news of my own soon. Happy to stay in touch if it’s helpful.

Wishing you all the best and remember the odds are very much in your favour.

@Numberoneworrier I could’ve written your post myself. How are you getting on now? I’m pregnant again after a triploidy loss earlier this year at 15 weeks. EPU are scanning me but not much can reassure me. Last time I measured behind and even though I knew it wasn’t right, I kept being brushed off, even at the 12 week scan where everything was ‘perfect’. Only the bloods revealed a problem, then later a CVS. So when I’m told everything looks good I just can’t believe it as I’ve unfortunately heard it before! I know it’s rare and not age related etc. but that’s not much comfort when you’ve already beaten the odds by getting to a second trimester triploidy baby!

Hello @Bettybird hope your ok!

Thank you for your response and congratulations to you also!

I am now 16 weeks pregnant and all is okay. I would push for what you can so I had scans every ten days at EPAU. But like you say everything can look great there it’s not until you get to 12 weeks scan and bloods. They did a thorough 12 week scan for me which lasted quite a while and they fast tracked my screening so a nurse rang me either way two days later. I got the best phone call of my life to say I was low risk for everything and not a triploid pregnancy.

You can’t help think your are going to be that one unlucky person again. Even now the worry is there, early scans I always had the triploid worry because it’s the screening that highlights the issue.

Last time looking back, I had so many red flags but I didn’t know much about anything in all honesty. I am a pro when it comes to scans, Triploidy everything now because of the research and how much I invested last time. This time I measured bang on sometimes a little ahead which give me reassurance.

How far are you now? I’m praying for you that you get the all Clear just like I did and I promise although not all the worry will go away, a huge lift will be taken from your shoulders and you will let a tiny bit of hope let you enjoy this pregnancy.

I am here if you want to chat or anything. Feel free to private message. I know how scary and rare it is for that to happen to us.

xx

Hi, don’t mean to alarm you, but you should have the whole picture, low risk at the double test doesn’t mean a no diagnosis. They miss cases. This is just a risk assessment.

Have you considered doing the NIPT, it’s a non invasive blood test that looks for genetical abnormalities, from 10 weeks onwards some of the baby’s blood mixed with mum’s blood through placental crossover. It’s still not a diagnosis (only cvs and amnio are) but it has a much much better accuracy. NHS offers this for free if you get high risk at the double test, but in your case you can do it private. As you have a history, I would consider doing it.

www.nhs.uk/pregnancy/your-pregnancy-care/screening-for-downs-edwards-pataus-syndrome/

good luck with your pregnancy

Thankyou , I know that the combined screening is not a whole picture, but it is how my case was discovered, and I’m being more closely monitored now with regards measuring correctly between scans.

In my previous pregnancy, I was offered an NIPT after my high risk combined screening results on the NHS, however with a 7-10 day waiting time for results, I opted to go straight for a CVS the following day. It was clear to the sonographer in the scan beforehand that it was not Patau Syndrome, but Triploidy, which was confirmed by the CVS results 48 hours later.

I was also told by the consultant in the London Fetal Medicine Unit who did my CVS, that an NIPT doesn’t screen for Triploidy and wouldn’t have picked it up either. NIPT only covers Downs Edwards and Patau, there is only one test that includes screening for Triploidy, which is the Panorama - that is not offered on the NHS.

So in my case, an NIPT would not provide any more relief unless I receive high risk for the combined screening.

unfortunately it’s a case of just waiting and hoping!

Yes the nhs nipt doesn’t, it only looks at the main 3, but the private ones under the names panorama or harmony (they’re also nipt but branded) do. These 2 private ones are offered everywhere in uk, USA etc. I chose one that had an uk lab for faster results and got them back in a week.

@CristinaNov182 there are a few medical papers out there showing maternal/dygyne isn’t picked up that well by NIPT because the test picks up the additional maternal chromosomes in the blood and disregards them as material rather than foetal. Obviously if you’ve had a paternal/partial molar triploidy that’s different. Definitely one to seek foetal medicine advice on before spending money. My local foetal genetics clinic does not use NIPT if you’ve had a previous Triploidy.