Triple x syndrom

[Lemon93]

I don't know what I'm looking for - maybe just input or personal experiences?

I am currently awaiting an amniocentesis to find out if my unborn girl has triple x syndrome. My mood is generally okay, but I have moments when I get sad. I've been feeling very confident about terminating the pregnancy if my girl has triple x, but I'm starting to doubt this decision. I can't figure out if I really have doubts, or if it's because I think it's becoming more and more unmanageable/sad to have to terminate as the belly grows and I can feel movements. I don't feel like I can feel myself or think clearly anymore.
I feel like it's a genetic lottery and I can never forgive myself if our girl turns out to have many difficulties. And that it’s also going to ruin our own lives.
I have a feeling that many people around us don't think the syndrome is that bad, but they haven't researched it either, as if they themselves had to make the choice. In addition, a factor has come into play, which is that we may not be allowed to interrupt at all. It makes me angry that I may not be able to make decisions regarding my own life and my own pregnancy. I might be able to go abroad and have a termination there, but that also seems very unmanageable right now.
I know there is a chance my girl has normal chromosomes, but right now I'm preparing for all scenarios. I already have a child with normal chromosomes, and I don't want to affect their life in a negative way either. I have been pregnant with a child with a chromosomal abnormality before, but the decision to terminate was “easier” as the degree was more severe.
I’m also afraid that I would always think “what if?” if I chose to terminate because so many girls are seamingly unaffected by this syndrom.

Does anyone have any wise thoughts?

Hello, i haven't been pregnant with a baby with triple x but i do have it.

Both my boys were checked if they have the male version after birth but as i have the mosiac version it wasn't a guarantee and neither have it.

I found out that i had it after loosing my first pregnancy to a rare genetic abnormality.

I wouldn't terminate a child with the risk of having it, and i also chose not to have a amniocentesis to check.

Sorry i don't think i have helped much 😅

@cookielove every response is helpful! So thank you for taking the time. There’s not that much information about it out there, so it’s really nice to hear from someone with first hand experience.

@WeDontTalkAboutBrunoNo nothing on the scans, but if we choose to continue with the pregnancy I think it would be nice to know if she is affected so that I can get her the proper help if she needs it

When i was ttc my second child i had lots of miscarriages and went to a specialist initially at my local hospital who declared without looking into it that my miscarriages were due to having triple x syndrome which was pretty shit of her to say and also not true. I continued to have a few more miscarriages and asked to be reffered to the secondary infertility clinic at epsom to find out why and to get help. While waiting for my appointment i actually fell pregnant again and by the time the appointment came i was 7 weeks, which is the furthest i had been since my successful pregnancy.

I Kept the appointment as there was no guarantee that the baby was going to continue to stick and as i went through my details about all that had happened and what the other consultant had said the doctor who was amazing said it was absolute rubbish that triple x was the cause and in her line of work they call women with triple x super women. It has always stuck with me and it always makes me smile.

@cookielove I’m really sorry you’ve had to experience all those miscarriages. And I am happy to hear that you ended up with a doctor who was actually helpful! It was a nice thing for her to say :)

Hi Op,

im really sorry you’re going through this. I understand other people’s responses in saying it is usually undetectable but there are cases where it is severe and leads to poor quality of life so I understand your conflicted. You said that you may not be able to end your pregnancy even if you felt it was the right thing to do..is this because you are past 24 weeks?

@FTMaz thank you for your response :) no, it’s because in my home country you have to seek permission to terminate your pregnancy when you are past 12 weeks. Usually chromosomal abnormalities qualifies you to get this permission, but right now it’s beeing debated whether a syndrom like triple x should even be tested for.

I have known 2 little girls with triple X, they had mild learning needs ( main stream school but needed help with reading/ writting) and were slightly shorter than average but otherwise absolutely fine.

Hi Op,

I don't have experience of triple X, or know anything about it, but I thought I would share my experience of finding out my (much much wanted) unborn baby had Down's syndrome last year and deciding to TFMR. Although we're talking about very different chromosomal abnormalities here, I do understand the emotions that come with having to work through a decision like this when there is a "grey" diagnosis (ie no clear cut information on potential

Firstly, on the subject of antenatal screening, have heard many women say "if it was Down's syndrome I'd be fine" but the reality is that no one knows what decision they'd make until they are in the awful position of having to make that decision. There is a wide range of outcomes for people with Downs Syndrome and we tend to hear more about people at the more highly functioning end of the spectrum in the media.

I found it helpful speaking to Antenatal Results and Choices (ARC) and also the Downs Syndrome association to understand the range of potential outcomes. We also spent time planning what childcare would look like (in the baby years, childhood and as a young adult), whether we could work, and what care might look like in later life. As older parents without a wider support network and knowing this baby would be an only child, we felt it was like the right decision for our son and us to terminate. It was far from an easy decision, I have had counselling support afterwards and I still have days when I wonder if it was the right decision.

I hope you don't mind me drawing comparisons to my experience. Mainly, my point was to say that your thoughts and feelings are valid and I'd really recommend speaking to a range of experts and organisations to gather as much information as you can to help you make your decision. If you can access ARC from where you are based, I'd definitely recommend it as they are very helpful.

Take care.

@Lemon93

My DD has Triple X Syndrome (Trisomy X) and if I had found out whilst pregnant it would not have crossed my mind to have an abortion because of it, but it is an individual decision and you have to decide.

The best information I read was on rarechromo.org it really put my mind at rest.

Also from the NHS - we are under a Genetic Consultant who is so helpful.

My DD does also have additional disabilities, not attached to the Triple X, but is very intelligent and does well in school - reading, maths etc.

@twoforwardandtwoback thank you so much for taking your time! I’m really so thankful for every response.
I actually understand your thoughts and position very well because my first pregnancy was also a baby with DS. In some way it helps that I have some experience but it’s still very difficult. I’m also further along this time because a CVS will not give me the answers I need. I really hate that I’ve been sucked into this genetic “world” in pregnancy.

When I was studying A level biology, our teacher disclosed, in passing, that she had triple X, when we were learning genetics. There were a couple of rumours about her, as she was tall and strong, and we thought she was a secret olympian, but nothing else unusual about her.

That doesn't really help, does it, because you already know a triple X baby MIGHT be completely normal, but might not.

@stopringingme ooh so nice to hear! Had this been my first pregnancy I would have just had her and would probably never have known.
Thank you for the link, I will definitely read it.

@Neurodiversitydoctor that’s lovely :) It’s reassuring every time I hear about mild symptoms. It’s the more severe cases that scare me.

@Maybethisyearornext you’re right, but I am still very thankful for each and every comment! And maybe other people in my position will also find it helpful now or in the future :)