Anyone know anything about Klinefelters Syndrome?

*max*

I'm sending my heartfelt wishes as well. You are being astoundingly brave, and I hope the scan goes well. x

Tulip

sending my heartfelt wishes also,hope the scan goes well.

bluestaff

just wanted to say hope everything goes well with the scan.

jackieglasgow

Best wishes for the coming days and weeks cleomolly. x

onlyroz

I have an acquaintance with a hormonal disorder that exhibits similar symptoms to klinefelters - and for a while the doctors thought it might be klinefelters, but it turned out not to be. However, he is infertile and has to have testosterone injections. I think he also has bone density issues as well. If it wasn't for the infertility then he would most likely never have found out - and that is probably the aspect that he is having the most difficulty dealing with.

starjumper

Hi, what a horrible choice to have to make.

I had my baby in November and the pregnancy was one awful thing after another, the pregnancy itself was a breeze but the hospital kept discovering one thing after another that was "wrong" with me or the baby and 2 of the conditions we had meant a 1 in 4 chance of still birth or not beign viable outside the womb. They kept banging on about downs testing which in light of the other things going on was really the least of our worries and when they mentoned termination (for potential downs) we were dead against it (I am and always have been pro-choice but I know downs kids and they are fantastic).

Anyway, we muddled through the pregnancy and I got to 38 weeks when they decided the baby was at high risk of still birth so they got him out, we had a scary hairy week in hospital and went home and I can honestly say he's thriving and perfect despite all the medical high drama. It is the doctors job to give you worst case but chances are it won't be.

Our lovely lad is doing really well and we have regular hospital appointments to monitor him and check he's still fine, which he is and there is no sign (touch wood) of any of the horrible things they told me about when I was pregnant.

It's a very personal choice you have to make but for me I couldn't get rid of my baby because they won't be quite as perfect as I'd hoped.

Good luck whichever way you choose to go, it's so hard *hug*.

EDIT - we also had genetic counselling for one of the disorders I have (but didn't know about for 30 odd years) when I was 14 weeks pregnant, it was really, really hard to get my head around all the different things that are related to my disorder which could affect the baby. At the counselling sessions they actually went though all the degrees of severity from the milder symptoms (which I have) to basically not being alive. They scared the bejesus out of me and OH and I spent weeks crying about it but we decided to go ahead with it as we'd already come so far.

No one can tell you what to do but if you fully understand the condition then you really are best placed to help your lad when he has problems and questions. Good luck.

dreaming

Cleomolly
I am glad if my words have helped a little. I am so sorry that you are facing this dilemma at a time that for many is just full of hope and joy. When I was pregnant with my son (30 odd years ago) scans were not commonplace and I don't think amniocentesis or the other tests were around - at least I was never offered any. I am not sure how I would have coped with the knowledge that there was a potential problem. As it was I had no idea until a few years ago, and in some ways I am glad about that.
As far as I know my son doesn't question his identity (but then he is very laid back about most things) and although I asked a few questions about how he felt when he first told me (as I knew nothing about the syndrome) his response tended to be that it was just something he had - like having blue eyes. I also felt quite guilty as I felt it was my fault in some way, or that as his mother I should have known. When the grandchildren (by donor insemination) were born I wondered how I would feel as they are not "related" to me, but I can honestly say that as soon as I saw them I felt connected to them and I know that he couldn't love them any more if they were "his".
I know there are some health implications that he may have to face, and often nag him as he doesn't always help himself with his diet etc. but then a friend of mine has a son (adult) who is suffering terminal cancer so in some ways I count my blessings.
The only thing I don't know is if DS's father knows about it - we were divorced a few years before all this was discovered. I think he would have had a difficult time coming to terms with it (especially if he had known before birth) as he tended to be afraid of things he didn't understand but at the same time felt unable to articulate that fear. Perhaps your OH is feeling like this, or that it is a failure on his part? I often think men have a harder time as for many their image/self-worth is tied up with their feelings of success/failue, but often seem not to have the communication skills to talk about their worries, or feel they have to "stay strong". Maybe it would help if he could find a man to talk things over with?
Other than myself, and DS, I have never told anyone on my side of the family, or friends, about my son's condition. I am not ashamed of it however, but it has so little impact on our lives that it does not seem important, and of course, it is my son's decision as to who knows his private business.
The only other thing I would say is that it is natural to grieve for the baby you may have dreamed you would have, and that talking about this (either with OH or a good friend/counsellor) may help whether you decide to go ahead with the pregnancy or not.
My thoughts are with you both.

cleomolly

for all those who have offered support and advice along the way, I just wanted to update you with regards to where we stand today. To say we are devastated is an understatement, after coming to terms with the fact that our unborn son has Klinefelter's syndrome and many sleepless nights wondering whether we could deal with what this meant for him and for us, the scan today showed other fetal abnormalities with his organs and gave us the news we were dreading, that our boy will more then likely not survive the pregnancy, or if he does will not survive outside the womb. They are suprised he's hung on this long but we knew he was a fighter. We now have to decide whether to let him come naturally or to induce labour. for now we are concentrating on giving our little one a name, the least he deserves, and what sort of burrial, cremation we want for him its all too much to come to terms with at the moment but I wanted those who posted on here to know how thankfull we were for your support and adivce and help. truely thankfull.

elliebobs

Cleomolly

I'm so sorry to hear of your news. Rest assured that your little one is loved now and forever.

Please take care of yourself.

Ellie x

RedwoodBrook

Cleomolly

I have sent you a PM. I too am so very sorry to read your update.

Best wishes,

Red