Downs Edwards and patau's syndromes - Fertility Network UK

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Downs Edwards and patau's syndromes

Dorekhani profile image
15 Replies

Hi everyone

Pregnant lovely ladies and mom I needs your views about these screening tests.. Should I do that or not?

Your comments would b highly appreciated

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Dorekhani profile image
Dorekhani
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15 Replies
Ivfgotadream profile image
Ivfgotadream

I did the NIPT Panorama teat which is expensive but I’m having twins and i was feeling really anxious. Especially as my friend had to terminate for medical reasons due to a chromosome issue and her embryo was a top quantity blastocyst and I had previously done PGS testing and didn’t get any normals (although my twins were untested). So a number of factors made me decide to do it

Also I’m glad I did as at the 12 week scan they couldn’t take the nuchal measurements as the twins wouldn’t sit still and the NHS doesn’t offer second chances if they can’t get them in like 5 mins in the appointment - then they’ll only offer a much less accurate downs only blood test

It also depends on what you would do if an issue was found. husband and I had previously agreed we wouldn’t continue a pregnancy if an issue was identified. If you decide you wouldn’t terminate for medical reasons under any circumstances then I wouldn’t bother testing x

Dorekhani profile image
Dorekhani in reply to Ivfgotadream

Thank you very for your detailed reply actually this is my first time that's why I don't know what to do.. But one thing is clear that I wouldn't terminate it at any way inshallah and my heart say that everything will b okay by grace of Almighty.

Congratulations for your twins🎉🎉

Mutleybob profile image
Mutleybob

I had the harmony NIPT screening/scan, I got the results last Friday and all was great luckily.

After previous miscarriages and a still birth due to heart abnormalities which they didn’t pick up until 20 week scan I didn’t feel I could wait until then to find out if anything was majorly wrong. So although it wasn’t necessarily the chromosomal abnormalities which worried me i knew they would do a really in-depth scan and saw the brain, spine and heart was all developing normally as it should for this stage as well.

I am a very anxious pregnant lady so anything to reassure me I will do even with the additional costs. It was worth it.

But as ivfgotadream said if you would keep baby no matter what then it wouldn’t be worth it.

Good luck with it all x

Dorekhani profile image
Dorekhani in reply to Mutleybob

Congratulations for your test results💖💐thanks for sharing your experience

Olivialinney profile image
Olivialinney

With my previous pregnancies I refused testing because I wouldn’t have terminated anyway but with my last pregnancy my baby was born with such severe chromosomes problems I wish I did. The problem was I found out at 20 weeks that my baby was poorly and at that point I wouldn’t even consider a termination. But next time around I would definitely have testing as early as possible

Dorekhani profile image
Dorekhani in reply to Olivialinney

Sorry for your baby who has chromosomal problems... Wish u best of luck for your next pregnancy 🤞

I didn’t test with my daughter as it had been a tough 7 year struggle to conceive her & we wouldn’t have terminated her so didn’t seem any point in testing.

We decided to test with this pregnancy as 1) just a dating scan would’ve been delayed more as screening tests have to be done by 14 weeks and 2) I didn’t want to have a baby that could die soon after birth too traumatic especially as we have our daughter to consider. 3- I’ll be 39 having this baby!

I was told if I hadn’t heard from the hospital within a few days to assume I’m low risk & should get a letter within a few weeks. To be honest it’s given me huge reassurance baby is well 😅 I was scared about the test but felt it was the right decision.

If it would make no difference to your decision whether to go ahead with the pregnancy maybe you don’t need to test but if it would then test or just test to give you that extra reassurance to know your baby is fine.

At the 20 week scan they can diagnose edwards & pataus syndrome you would find out then, both conditions are extremely rare.

It’s a very individual decision I wish you the best with everything xxx

Dorekhani profile image
Dorekhani in reply to

I m really very sorry for your daughter but very happy for your present pregnancy... I hope everything will b okay inshallah for you and me as well... I refused to do that tests today because we are trying for 12 years to concieve so we both decided not to do that... Praying to Allah that everything would fine inshallah... Thank you very much for ur reply.. Praying for u for ur healthy baby🙏🙏

in reply to Dorekhani

Thank you. Our daughter is well & healthy lively 16 month old so grateful for her. I don’t blame you not testing after such a long struggle wow 12 years so lovely your patience has finally been rewarded well done for not giving up xxx

Dorekhani profile image
Dorekhani in reply to

Ohh great that your princess is okay😊thanks.. Yea I m granted by Almighty alhamdullah ❤️thank you very much💞

Dorekhani profile image
Dorekhani

Sorry I didn't understand heavy utrus???

cmbxm profile image
cmbxm

I tested, it’s not an invasive test it’s a blood test and a scan, a Down syndrome diagnosis wouldn’t phase us, but with Edwards or pataus it can be incompatible with life and I couldn’t carry my baby knowing they’d die and potentially die a painful death so I’d need to have all the information so I could terminate if it meant their diagnosis was incompatible with life xx

Dorekhani profile image
Dorekhani in reply to cmbxm

Thanks for reply.... You know I m trying to convince for past 12 years so this pregnancy is a blessing and excitement for me so I m hopeful that blessings is blessing full package inshallah nothing will. Be happend such like this becos I m not going to terminate it. Praying for all babies that they come safe and healthy in this challenging world amin🙏🙏

I had the NHS test which is 70 percent correct. It did give me peace of mind to know my baby would not have any of the conditions that the test detects for. But, there is no way I could terminate due to Downs. Although, with Edwards and pataus from what I read before the test the life expectacy is really low. Apparently alot of people with these sort of conditions only live a few days after birth and life quality is very poor. It must be terrible for the parents with making this decision. But, fortunately Edwards and Pataus is not that common.

Dorekhani profile image
Dorekhani in reply to

Congratulations that your baby is safe and I m praying for all babies that Almighty protect then from all such kind of disease amin

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