my baby is diagnosed with Kleinfelter's- any advice?

[Guest guest]

Hello everyone. I am here to learn and gain some support and

understanding. I am 14 weeks preganant and my unborn child was diagnosed with

Kleinfelter' s 47 xxy syndrome. The little guy also has a cystic hygroma.. A

cystic hygroma this early in a pregnancy is a key indicator that there is

something wrong so we had genetic testing done and we were given our diagnosis

yesterday. The size of our hygroma is larger than a normal Kleinfelter' s baby,

but they do not have many statistics on this since the science of being able to

view and study young fetuses is still fairly new.

We were also told that only 40% of Kleinfelter' s syndrome babies

survive during pregnancy. With our cyst size that may also lower our chances of

survival rate. We go for our next ultrasound in 2 weeks to see if the cyst is

getting bigger or smaller. If it is getting smaller than the child should

survive but still has that 40% chance.

My question as a possible new mom is- what struggles have you had with

Kleinfelter's? How early were you diagnosed? From reading about the disorder,

most males don't even know they have it till later in life. Is testosterone

therapy helpful? Did you find that you had many social and learning

difficulties? Are most surgeries covered by insurances if you need them? Have

you had any real hard emotional struggles with the disorder. What advice do you

have for a young mother with a baby on the way who has Kleinfelters? I have not

been able to see pictures of people with the disorder. All i have seen are silly

diagrams. So not helpful! We were told the child will be tall, thin, less hair,

smaller genitalia, recessed testicles, more hip curvature and have possible

breast tissue- or be asymptomatic.

I really appreciate any thoughts and feelings you can relay to me, as I plan to

name my baby Chance if he survives. It is amazing how science can detect these

things so early now, but also it is a real stresser on me knowing I have a high

chance of losing my baby.

Thank you in advance for sharing your stories and thoughts. It is very helpful

since I am reaching out with hopes that someone may have been through or know

someone who has gone through this. It is such a rare circumstance and i know i

put a lot of questions out there, but I want to learn from actual people, not

books and statistics!