Scared of conceiving after TX due to Trisomy 21 :(

[nicole.emma]

Hi Everyone,
I am in my early twenties are recently had a medical termination at 13 weeks due to our unborn baby having Trisomy 21. We found out from a CVC & were ovbiously devestated when we found out the news. It has definantly be the hardest thing myself and my partner have ever been through.
We spoke with the genetics counselor who advised us that it was caused by Trisomy 21 and was not a translocation (Which is good as it is a lower chance we will have this happen again)
My partner and I want to conceive again ASAP but are so terrified that the baby may have the same problem.. Id really just like some advice if anyone has been in the same situation or has had luck with a healthy pregnancy after experiencing something similar.

Thanks

xx nicole

 

[wish2bmum]

Hi nicole or Emma just wanted to say I understad how you feel, not because I'm trying to lessen your grief, or imagine how you personally are feeling, but we've been through something very similar. I'm in my mid-twenties and after getting our first BFP last December we were over the moon, to cut a long story short we ended up having a TFMR at 16wks, our baby had Klinefelter's Syndrome which we knew from having an amnio after being told at the 12wk scan that the nuchal measurement was high. We too saw a genetics counsellor, they wasn't very helpful to be honest but told us the chance of this happening again were slim. The emotions you feel are overwelming and I can fully understand that need to conceive again asap. I was dreading my due date early Aug and not being pregnant again, but a little bit of hope for you, I've just found out I'm pregnant again and cautiously hoping this is the one, those fears of what happend repeating itself have all flooded back but I'm hopefull and glad that finally there is some light at the end of that dark tunnel we've been in for the last 4 months

Hugs to you both xxx

 

[hannpin]

Hey Nicole,

I recently, just over 3 months, had to TFMR the pregnancy of my son at 20 weeks after finding out at the anomaly scan that he has severe spina bifida, along with other complications. Not I took my prenatals like I did with DD so why he had SB i do not know

We are already TTC, and not because we want to replace him, just because I want another child. The risk is there of this happenening again, however the love for my future rainbow baby out weights my fears right now.

good luck with your TTC journey, if you ever want to chat feel free to PM me xxx

 

[jojo23]

hey hun so sorry to hear of your loss! im 24 and lost my little girl at 22 weeks in feb. i didnt know anything was wrong until i had my 20 week scan which showed she was very small for gestation and there was low fluid. i went back 2 weeks later and she had passed. i had lots of tests done and they all came back clear but the midwife did comment that when i had her it looked a little like downs syndrome though she couldnt say for sure. they sent off a cell sample but unfortunately it didnt grow so we got no answers.

i know its not the same situation but i think we're all scared of it happening again, we're trying so hard to get pregnant at the moment but in the back of my mind im absolutely terrified that if i do there'll be something wrong. i guess we just have to be strong and stay positive! this forum is so great and id never have gotten through alot of my grief if it hadnt been for the ladies here...we're all here for you xxxxxxxx

 

[Andypanda6570]

I am so very deeply sorry for you loss I think I did read there is a 1 percent chance of it happening it again, but it is such a small chance. I lost my Ava at 18 weeks and thought it was Trisomy 18 but the cells never grew so I will never know if that was the cause . But the doctor did say there is a very small chance when you have already had a baby with a problem that is can occur again, although I never heard of it occurring again. I would not worry so much I think you will go on to have a healthy and wonderful next pregnancy.
Good Luck XOXOXOOXOX

 

[sharonm153]

Hi Nicole

just wanted to reply to your post as I have also been in a similar situation to you. I had to terminate my pregnancy in November last year after finding out at the 12 week scan that my baby girl had trisomy 18 (Edwards Syndrome) after several long and heart breaking conversations with our doctor we were told that this condition is not compatible with life, we were also advised that if she made it to term she would only survive a few and hours and would be in pain. Our baby girl grew wings on 20th nov at 16 weeks and 2 days.
I never though it was possible to hurt so much but both myself and oh had said we would both like to try again and were advised that we were no more at risk that anyone else and that we were just very unlucky. We decided to try and get on with things and take some time to heal a bit and maybe try again in year or so, I didn't want to become obsessed with getting pregnant again.

That wasn't what god had planned for us. I found out I was pregnant in February, total shock! I am now 20 weeks and all scans have looked perfect so far, I never took an amnio or cvs this time as I was afraid to temp fate.
I wont say it has been easy as I really struggled with guilt in the beginning as I didn't want to feel like my baby girl was being forgotten. I will never forget her and my heart still breaks for her everyday. I spent the first 12 weeks of the pregnancy terrified that the same thing would happen again but I now have to believe that my baby is growing every day and is going to be perfect although I wont be at ease until I have him in my arms.

My advice is if you want to try again then you should and just keep believing that you and your oh will get your rainbow baby. I wish you and your family all the luck in the world xx

 

[poppy2010]

Hi Nicole, just wanted to give you my experience as I felt like you just over a year ago. My little girl was born asleep last april at just over 23 weeks due to trisomy 18 and like you the need to be pregnant again was overwelming. I was lucky enough to fall pregnant 6 weeks later and after a worrying (but straightforward) pregnancy, I gave birth to my rainbow baby boy in february this year!! He will never replace my little girl but he has helped a lot!!

I was told by the consultant that the chances of it happening again were just the same as any other person possibly even less as its already happened to me!!!

I wish you lots of luck in your journey

xxx

 

[SarahJane]

I can't answer your question but I am very sorry for your loss xxx

 

[emk10]

Hi,

Just wanted to send hugs!!! What a nightmare you have gone through. Unfortunately I know only too well as I went through exactly the same. I lost my little girl Emilia at 19 weeks in February. We found out following our amnio that Emilia had trisomy 21 and growth restriction and was unlikely to survive the pregnancy. What a heartbreaking time!! It was my due date this week!!

I miss her immensely, but have moved on with my life so it does get easier to deal with. When I saw my consultant she said we had a 0.75% increased risk of it happening again, so not a greal deal really. Plus we will be monitored closely next time which was reassuring to know.

Im sure you will go on to have a successful pregnancy, fingers crossed for you x x

 

[Aero]

Hi Everyone,
I am in my early twenties are recently had a medical termination at 13 weeks due to our unborn baby having Trisomy 21. We found out from a CVC & were ovbiously devestated when we found out the news. It has definantly be the hardest thing myself and my partner have ever been through.
We spoke with the genetics counselor who advised us that it was caused by Trisomy 21 and was not a translocation (Which is good as it is a lower chance we will have this happen again)
My partner and I want to conceive again ASAP but are so terrified that the baby may have the same problem.. Id really just like some advice if anyone has been in the same situation or has had luck with a healthy pregnancy after experiencing something similar.

My first child was born with Trisomy 18. My mother also had a Trisomy 18 baby so I was absolutely terrified that I was one of those really rare people who could pass on Trisomy 18 genetically (it's normally just an unlucky fluke).

If you are concerned, you can have genetic testing to ensure that you are not a carrier (I don't know if you can pass Trisomy 21 on in rare cases? I'm guessing you can?). It isn't a quick test - I had to wait nearly 2 months for my results as they had to be sent to a special laboratory, but it gives you MASSIVE peace of mind when it comes back negative.

I am also having CVS with my current pregnancy so that I know 100% if anything is wrong with my baby. If you are in the UK, the midwives should offer you this as soon as you become pregnant again. It may not be in your local hospital (I need to travel to London) but they should be able to talk everything through with you (there are risks associated with having a CVS done) and help you put your mind at ease.

 

[Peril]

I am so sorry for your loss. i had a termination in feb 10 due to a triploidy (trisomy of every pair of chromosomes). Not common, but as it was the third pregnancy i had lost (previous mmc and anencaphaly (neural tube defect)) i was terrified but after seeing a genetic councillor in june last year, and being told we had a 98% chance of going on to have a healthy pregnancy we gave it one more try. i was kept a close eye on by consultant and had a healthy baby girl in march. please don't give up hope. good luck x