Turner Syndrome mom here

pete0121 · August 2013

Hi ladies. I've been MIA from the bump since my daughter was born in Oct 2011. At that time, she was diagnosed with Turner Syndrome. For those of you unsure of what that is (like I was when she was diagnosed), it is a deletion of her second x chromosome. Therefore, she only has 1 x chromosome. This can cause a variety of health related issues i.e.: short stature, need for growth hormone injections to grow, heart defects, kidney abnormalities, hearing/ear issues, infertility, need for hormone replacement therapy to go through puberty, among others. Like any syndrome, each girl (only affects females) is affected differently. Cora, our daughter, is amazing. She does not have a heart defect, though has a horseshoe shaped kidney (that functions perfectly). She did get tubes in her ears for persistant fluid retention at 15 months old. As of now she is still growing normally so we haven't had to look into GH yet, but will eventually.

I'm posting here because I just found out I'm pregnant with a little surprise and due in Apr 2014. Even though we have no larger risk than the normal population of any issues with this pregnancy I'm still scared. It was a surprise so I didn't take prenatals from the beginning, I had glasses of wine each night, was on zoloft and just didn't take care of myself like I would've if we were planning.

Also, when Cora was diagnosed, it was so rare (1 in 2,500) I was desperately searching for others to help me. I was a mess. Over the years I've met some other amazing moms with TS girls and I've grown so much. I want to be help to other moms with newly diagnosed girls who are just looking for someone like them.

mommytoconnor · August 2013

I work with a girl who has Turners. She is an amazing person as well. She is super smart, and luckily has had no issues that typically affect Turner's kids. She is a little short, but she is about my height, 5 foot 2 inches, so not terribly short or anything. She decided against growth hormone but does take birth control to regulate periods.

pete0121 · August 2013

Thanks for the post! I find it amazing that she is so "tall" with no GH. I myself am 5"2' so sh was probably going to be tiny any way. Therefore we will likely need the GH to get her to a normal height.

mommytoconnor · August 2013

My friend wasn't diagnosed until she was 16 yrs old. She is now a registered nurse working at the same hospital I do.

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