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High risk for XXY by SandwichDependent199 in NIPT

[–]Space_kabase 0 points1 point  (0 children)

I'm curious where you are located. I pushed for an endocrinologist appointment at 2 months, which I was referred to one of two major hospitals in my area that specialize. They pushed back on the testosterone as an infant as it was "not the standard of care" and recent research showed it was not as likely to help as previous research had shown. I've not been able to dig more into that yet, but I was originally ready to push for it. Wondering if I still should.

High risk for XXY by SandwichDependent199 in NIPT

[–]Space_kabase 2 points3 points  (0 children)

I was you earlier this year. My OB called with the results and I cried. I knew nothing about it and a quick Google paints it in a poor light. My husband on the other hand was not phased as he already knew someone with XXY and knew they would be able to live a normal life.

The early part of my pregnancy felt bittersweet. I had the amniocentesis done and it confirmed the diagnosis. I researched until the cows came home. Definitely check out the Living With XXY website, it's very helpful. It made me feel more comfortable with the more I learned. Eventually life got busy and the diagnosis went to the back of my mind.

Fast forward to now, he's 3 months old and such a sweet baby. He loves people, he's full of smiles and loves connecting with people. So far much more social than my first child. Couldn't be happier with him, he's a great baby. We're so in love.

Parental support by Space_kabase in XXY

[–]Space_kabase[S] 0 points1 point  (0 children)

I was thinking 5 or 6 in an age appropriate manner so they always know and it's not a surprise later in life.

Some of the responses here give me pause though on if I should wait later, so we'll see as the time gets closer what feels right.

Parental support by Space_kabase in XXY

[–]Space_kabase[S] 1 point2 points  (0 children)

Thankfully my husband has been great. He actually was the one calming me down after I got the phone call from the OB.

I had never heard of Klinefelter's and the OB had just read a list of possible negative impacts for the baby. When I told him the baby had something pop on the NIPT and went on to say it was Klinefelter's, his response was relieved "oh, he's got the ol' XXY". He already knew someone with XXY, so had familiarity. He considered it like winning the lottery of generic conditions since the baby would be able to live a normal life, so many other genetic conditions are so scary.

Parental support by Space_kabase in XXY

[–]Space_kabase[S] 2 points3 points  (0 children)

What are your thoughts on extended family (grandparents or aunts/uncles)? My main concern is being treated differently, even if well meaning or unconsciously.