Diagnosed to be a Fragile X Carrier - support please
I am now 10 weeks pregnant and I have met with a Genetic Counsellor to discuss my Fragile X Carrier status and what that could mean for my future child.
I found out from her the following information -
1) There is a 5% chance of me having a child with Fragile X Syndrome
2) If they did a CVS test they could tell from that if I am having a child with 200 repeats. If it is a boy and has 200 repeats then it will have Fragile X Syndrome. But if it is a girl with 200 repeats then she could be absolutely fine or she could have Fragile X Syndrome there is no way that they can tell. She recommended I did one and I said I would think about it.
3) I have 68/69 repeats (I did 2 tests the results were slightly different)
Based on these facts I decided not to have a CVS test:-
1) There are no people in my extended family with Fragile X Syndrome
2) My risk is only 5%
3) Having already had one miscarriage I didn't want to do a test which carries a risk of miscarriage.
4) I don't want to be put in a position whereby I have to consider abortion, particularly if Ami would be basically telling me I would have to have one if I was found to be carrying a child with Fragile X Syndrome. And especially incase they found out it was a girl with 200 repeats.
5) I didn't want to have to worry for 10 days after doing the CVS until I get the results as I don't think worrying is good for the baby.
6) Should we end up with a child with the syndrome I thought that Ami may change his mind about wanting to get rid of it once he has grown attached.
My husband has supported my decision not to have a CVS but has said that if we have a child with the Syndrome we are 'getting rid of it.' Which basically means giving it up for adoption.
Today I just had a call from the Genetic Counsellor basically pressuring me to do a CVS test and pointing out I have to make a decision about it quickly as it needs to be done soon. I feel sick and really upset and stressed all over again.
Now she is saying she thinks it would be a good idea for her to talk to my husband. I really don't want that because I am afraid that she will convince him and then they will both pressurize me.
This whole thing is a bit of nightmare. I feel like if my husband forced me into an abortion that could be the end of our marriage. And if I had a child with the Syndrome and wanted to keep it, or was forced to give it up that could be the end of our marriage.
Should I just do this CVS? The only thing that I am now thinking is that I have the CVS and hopefully they find out everything is fine then I might actually be able to relax more afterwards knowing that. What do you think?
Should I have a CVS? Is there anyone else out there who is also going through this or has been through this?
I would appreciate advice.
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