Anyone know anything about Klinefelters Syndrome?

cleomolly

Hello and thank you in advance for any replies and advice. I'm pregnant and expecting a little boy with Klinefelter's Syndrome. Apart from what I've read on the internet I'd like to know any first hand experiences of this condition, whether that be someone with it, knows someone with it, or has a child diagnosed with it........

I'm struggling to come to terms with making a decision on whether or not to terminate the pregnancy and being 15+ weeks pregnant want to make that decision asap (but as informed as possible). I think at the moment the thing I'm most concerned of is that my boy will never be able to have his own children and will be infertile, I don't know how a child would cope with this.

any advice much appreciated. Thanks

elvis86

cleomolly wrote: »

Hello and thank you in advance for any replies and advice. I'm pregnant and expecting a little boy with Klinefelter's Syndrome. Apart from what I've read on the internet I'd like to know any first hand experiences of this condition, whether that be someone with it, knows someone with it, or has a child diagnosed with it........

I'm struggling to come to terms with making a decision on whether or not to terminate the pregnancy and being 15+ weeks pregnant want to make that decision asap (but as informed as possible). I think at the moment the thing I'm most concerned of is that my boy will never be able to have his own children and will be infertile, I don't know how a child would cope with this.

any advice much appreciated. Thanks

I know absolutely nothing about Klinefelters, and am very pro-choice. But, if the most serious/worrying "symptom" of this sydrome is infertility, I would really question whether that's reason enough to have a termination?:(

Sure someone with more knowledge will be along soon. Good luck with whatever you choose though.

melancholly

no personal experience but these websites may help in terms of understanding what the syndromem is and how other people cope. some are family support groups:
http://klinefeltersyndrome.org/
http://www.ksa-uk.co.uk/
http://www.klinefelter.org.uk/
http://www.cafamily.org.uk

Apricot

International support forum http://www.xxytalk.com

durham_girl

I have no knowledge of the condition, but have just had a quick skim of some of the links above. It doesn't seem to be an unmanageable condition and I would also question whether it was a big enough problem to have a termination.

Given the option of life but being unable to have children of my own versus no life at all, I know which option I would choose. If it were me, this would be the deciding factor.

I really don't want to sound preachy but having a little boy myself, believe me as soon as you see your child for the first time, they are perfect and any problems they may have go straight out the window.

ETA I'm going by what you said, rather than reading about the condition in any depth, so I've assumed that the infertility is the biggest symptom. Apologies if this isn't the case.

LabLover

Altho no where near as severe as Klinefelters Syndrome I have a hormone disorder ,Instead of having a nice balance of male and female hormones I produce not enough of one and too much of the other. I didnt have a menstruel cycle as such, I also suffered with excess hair , luckily not on my face, and have oily skin. Due to my lack of menstrual cycle I have never felt very feminine. The major symptom of my disorder was also infertility due to lack of ovulation. However as you can see from my signature I am pregnant. I know that klinefelters can affect development so the infertility aspect is not the most important symptom but something you will be considering. It can be gutting learning that you cant have children ( my friend has low sperm count) but isnt the be all and end all,he may even decided he doesnt want children. It must be such a difficult time for you at the minute and you will have lots buzzing around your head. Have the hospital given you much information?

flower24

I've just had a read up about the sydrome, in simple terms the male has an extra female chromosome and so may develop small breasts, a pear shape and testes will remain small, amongst other things. I'm guessing this would be a fairly big issue for a teenage boy, but I personally couldn't terminate a pregnancy because of it.

ticklepenny_2

Hi,

I have not personally encountered Klinefelter Syndrome, however one of my friends has this and he used to struggle at school but went on to do a degree in engineering and has adopted a little boy. He is one of the nicest people I have ever had the chance to meet and is a fantastic father. He does feel it necessary to tell people about it just incase they dont understand his behaviour, but he is just a very caring and sensitive man and I dont think he really needs to tell people but he is just very cautious. I know that there are varying degrees to which people are effected by the syndrome and you wont ever know how much it effects him till he is here.

I hope through some of the sites that have been provided you are able to find enough information to help you make an informed decision. ((hugs))
x

carefullycautious

After reading the full extent of this condition and its implications I personally would terminate. Apologies if this offends.

TO the op only you and your partner can make this decision. Sorry you are facing this.

cleomolly

thank you all for your responces and kind words. It really helps to hear how other people feel, you get a different responce to what friends and family may tell you so I really appreciate it.

the links are great, thank you for posting melancholly & Apricot

durham girl its hard to imagine having him here as its just been one thing after another through this pregnancy so far, but being reminded of others unable to have children makes me think in a different light! its also hard to imagine the feeling once your child is here and in your arms.

lablover, thanks for sharing your personal circumstances, I know I could cope with all the other aspects such as learning and developmental delays, also the behaviour issuesand so on, but all I can think about is the things that will affect him directly such as the possibility of being teased, bullied becasue he's different from his friends, not going through puberty like his friends, not being able to have children, and being physically different in the sense of his testicals being small and possibly being very tall and thin, or pear shaped with small breasts. These are the things that are making this decision hard, knowing that I will put him through all that if I bring him into this world! and the possible recentment he may feel towards me / us as his parents. as immynjoesmum says, these are my worries.

We have only read things from the internet so far but have an appointment with the genetics specialist on Friday so I guess will be given a lot of info then.


ticklepenny, thank you for your post, its good to here of a positive story about someone directly affected by Klinefelters. And your friend does sound lik a lovely person.

LabLover

I didnt find out about my condition untill after puberty. My symptoms were masked with the pill as it contained hormones,so tricked my body into behaving almost normally.There were still underlying conditions. No way would I resent my parents (if they had know I would have condition) sometimes I could see my mum and dad get really upset for me when I was having issues. If you choose to keep your baby at least your son will know from day one about his condition and will have years to prepare for puberty. Good luck with the specialist
xx