Anyone else mc'd because of triple x syndrome?

[Chilli]

So I was told last week that my baby had triple x syndrome and little chance of survival, but I've been reading around and it seems that many little girls with this syndrome survive - have I been fobbed off or have others out there lost for the same reason?

 

[blondemd77]

sorry for your sad news, Chilli. i am a pediatrician and from what i've read/learned over the years, most of these fetuses DO spontaneously miscarry at some point in the pregnancy. i, personally, have never seen a child with this syndrome.

instead of triple X's, my baby had triple chromosome #21, meaning he had Down's Syndrome. We terminated 5 days ago, so i'm feeling your confusion, indecision and pain... im here if you need to talk/vent

**hugs**

 

[Chilli]

Thanks blond. We already lost our LO so didn't have to make any painful decisions. I'm just worried that they may be overlooking the real problem and will be in such a mess if I have any more MCs (have had 2 this year)

 

[toby2]

chilli as far as I am aware they were never any tests carried out on my angels so i have no idea why i lost them, sometimes that troubles me and sometimes its a relief- cant imagine what it must be like to have the information you have, hope it doesnt trouble you too much
xx

 

[trying4#1]

i looked it up and found this site:
https://en.wikipedia.org/wiki/Triple_X_syndrome
from what i read, your hospital could not diagnose triple x without an amnio/cvs because there are no physical symptoms. how did they diagnose it?

 

[Chilli]

Thanks trying. They did a test on the baby after my D&C as this was my 3rd MC, I think it's called kyrotyping!

 

[AlwaysPraying]

That's really good information to have Chilli! Most all of these types of things are caused by ONE sperm or ONE egg not developing properly. Meaning that out of the million sperm, most all are perfectly fine, but this one (or the egg) had an extra "X" chromosome. This one particular baby had three X chromosomes because of this. It is the same as down syndrome which affects the 21st chromosome set (as mentioned) and the 18th, known as Trisomy 18 and the 13th, known as trisomy 13 (that's what our boy had). Each pair of chromosomes are responsible for different development, what yours dealt with is the sex of the baby. (sorry, I'm sure you already know all this!)

I could go on and on. But to get to your question, there is a slight amount that are born with this condition that are not diagnosed earlier. They end up having a mild version of this syndrome where only some of the cells in the body will have an extra x chromosome and others will be "normal" with just two. This is called "mosaic". (it's possible for my boys syndrome - trisomy 13 - to be survivable IF it was the mosaic kind, which mine didn't have). Long story short, sounds like this was a one off thing that happened and shouldn't happen again.

I'd be sure to go in and ask if this could be connected to your other losses, but from what I understand it shouldn't be. Which is really no help understanding why it's happening!

 

[tdotchick85]

I know you posted over 2 years ago, however i've been trying to find other triple x girls in canada, I have triple x, and there are support groups on facebook. However I seem to be the only triple x women in canada, My doctor has only had one case and I'm it. I'd like to find out more about canadians and triple x. Have you found anything out in the last 2 years about it? did you lose your baby girl? or did she come to term? I hope everything turned out good, I've never heard of triple x girls ending up being miscarriages. Please if you are still apart of this group please message me, i'd love to find out more.
thanks,
tamara

 

[Jeledi]

Hi Chilli & Tdotchick! I am replying to both of you (Tdot follows below )

Chilli: I have a 2 year old daughter with triple x. Luckily when we were diagnosed with prenatal tests the geneticist who attended to us was super relaxed about it and told us it was not a big deal. She knew about it and said most girls were fine and that it was not a serious genetic impediment. This help calm our distress HOWEVER of course we scoured the web to find out all about it desperate to make the right choice - an informed choice. At the time we were living in a foreign country to information was pretty much limited to the web. That said we came to discover few different things about triple x.
1: there is verrrrrry little known about it and almost as much information out there.
2: a lot of the information that is available is very skewed. Apparently about 1 out of every 1000 women in the world is triple x and most don't even know they have it (can't be all that bad).
Until recently women didn't have prenatal genetic testing done and so the only women known to have triple x were women mothers who came forward with girls with problems who were then tested and discovered to have triple x. Those girls with triple x and no or insignificant problems would not have been diagnosed. Thus any studies/testing/etc. would be on a skewed segment of the xxx population.

We decided to go ahead with our pregnancy (I was never told there was a higher risk of MC). I had a great, healthy pregnancy and have the most delicious little girl. She is 2.5 years old and so far there has been nothing out of the ordinary about her. She has a few personality quirks, but nothing unusual or unlike other kids her age. She is very smart and actually helps other kids at her daycare figure things out (and she is the youngest by a year!!). She is beautiful and has a great temperment. Just the other day my husband & I we thanking the stars that we didn't let fear and ignorance get the better of us and terminate. It would have been a huge mistake.

We love our daughter and she is right along side her peers in everything (a bit ahead in some a bit behind in others - but all normal).

Anyhow I guess this is for you and anyone else ou there who finds themselves faced with a triple x pregnancy. PLEASE don't worry.

I would be happy to share my experience with anyone who is looking for more information. Feel free to email me.

now TDOT!!!

haha! Hi! I would love to talk to you about our girls.

I just hapenned to google trisomy x in canada to see if anything was going on here (first time I have done so since coming back home) and found your post. Coincidence?

I am also in Canada and also know no one here that has a triple x girl (although there are surely 1000s as again 1 in every 1000 girls is born w triple x (beknownst to them or not). There doesn't seem to be much of a community here or much information available locally (I cannot believe your pediatrician has said she has never had another triple x patient...). I was actualy googling hoping to find specialists here. Do you know of any? Where are you living? Feel free to reply privately.

Jeledi

 

[Chilli]

Hello tdot and Jeledi.
My triple x girl (Rosa) miscarried when I wrote this back in 2009. I went on to have another miscarriage and am now 36 weeks pg. I was never convinced that the triple x was the cause of the MC as the consultant suggested and your stories just make me more sure. I stood my ground and had extra treatment during this pg which seems to have worked. Given the choice I would've kept Rosa whatever her difficulties and hence have had no testing done with this LO. Thank you for your success stories and I'm glad you were so brave Jeledi

 

[Andypanda6570]

You are all SO brave. I am so deeply sorry for all your losses.
However I am so happy you are 36 weeks pregnant, I wish you all the best XOXOOXXOOX

 

[FarfromHome]

I miscarried 6 weeks ago and found out that our little girl Joya had triple X. I've been kind of confused about the miscarriage rates with this too.