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Anyone have a DD with Turner's Syndrome?

champagnachampagna
in Special Needs

I post occassionally on this board, but haven't come across another TS mom.  Maybe there is a lurker w/ a TS DD?  I'm hoping to connect with other TS parents.

My DD just turned 3 and we found out about her condition shortly after she was born.  She had open heart surgery to correct Coarctation of the Aorta at 4 days old.  She also has a bicuspid aortic valve and had a valvuloplasty (?)/ balloon at 9 mos.

She was born with puffy hands and feet, and she also has a slightly webbed neck too.  DH and I have also noticed that one eye is slightly larger than the other.  Her eyes are also a bit downturned, and she is quite small.  She is 3 but looks 2. 

Other than those things, she is a happy little girl, who loves to talk and is super affectionate.  Smile

DD1
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Re: Anyone have a DD with Turner's Syndrome?

  • Buckets of MoonbeamsBuckets of Moonbeams

    Not me, but my little girl was born with a large VSD and a small ASD.  The ASD resolved on its own, but she had OHS to repair the VSD in early December.  In what they tell me are completely unrelated to her heart defect (which was a random occurance), she also has a sacral dimple and a benign brain cyst.

    She's small too: at nearly 7 months she looks about 4 months.  BUt like your girl, I've never met a happier, sweeter, more affectionate or more alert and interactive baby.  They tell me her growth will catch up some, but she might just be little (I'm quite small, myself.)

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  • amajaneamajane member

    My DD doesn't have Turner's but I was lurking on TTTC last night and there was a woman posting who has TS.

    Also, my DD has Coarctation of the Aorta. We're meeting with a cardiologist at the end of the month to discuss a plan of treatment.

    And my DD is on the small side- 15.5 lbs at 10 months. She looks like she's 6 months old.?

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  • McBonBonMcBonBon
    Not me, either, but my DS has Noonan Syndrome, which used to be called Male Turner's Syndrome. It's very similar. My son also had Coarctation of the Aorta and an ASD and a VSD that were repaired when he was 6 days old.  He's not small yet, at least in weight. He weighs 15 lbs (fed with a G-tube) but is only 23 inches long at 4 months. He's fed with a G-tube in his belly, which is the only reason he weighs so much. If he actually had to eat he probably would not have gained any weight yet!
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  • july22bridejuly22bride
    One of my good friends at work has a daughter with Turner's Syndrome.  she is about a year and a half, and is the sweetest little girl on the planet.  I know that she had a similar situation (open heart surgery, puffy hands and feet, etc)  If you want me to put you in contact with her, let me know. 
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  • sh4602sh4602 member
    i dont have dd with turner's syndrome but I myself have turner's syndrome. email me at snowbird4602@yahoo.com  or you can find me on the nj nest board  if i can help you
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  • sh4602sh4602 member
    i also had coartaion of the aora and bicuapid valve 2 open heart surgries for me when i was 7 and 8
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  • champagnachampagna

    imagesh4602:
    i dont have dd with turner's syndrome but I myself have turner's syndrome. email me at snowbird4602@yahoo.com  or you can find me on the nj nest board  if i can help you

    Aww thanks, that would be great.  That's so nice of you, I will email you.  Smile

    DD1
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