Connections » General Discussion

Daughter with Radial club hand

(12 posts)
  • Started 1 year ago by juliediane01
  • Latest reply from tpoeela

Total votes: 3

  1. juliediane01
    Member

    My daughter Meagen was born in 1993 and was diagnosed with Di George and Vater Syndrome. She has had spinal infusion and VSD repair on her heart. Her left arm is shorter than her right arm and she was born without her left thumb and radial bone. When she was 3 she had several surgeries at Riley hospital by Dr. Mih to straighten her wrist and had her index finger removed and placed and reconstructed as her thumb. She is getting ready to have another surgery near the end of January to have her left arm lengthened by placing an external fixator in her bone and she is also going to have her wrist centralized again now for the 3rd time. She is now 15. We are are very nervous about her surgery. She is now in high school and is having a hard time with her appearance. I would love to find other kid's who are going through the same thing to maybe help her.

    Posted 1 year ago #

  2. blueberry
    Member

    Hi! my daughter is little so she can't be any help ;) But i did want to mention taht I saw a Yahoo group called HandDifferences. I have never read it so I can't give any approval but i think it would be worth checking into. They might know of some other groups too.

    http://groups.yahoo.com/group/HandDifferences/summary

    Posted 1 year ago #

  3. nbipakc
    Member

    There is also a new Yahoo group specifically for club hands. It's a small group, but someone probably had an older child. I know there has been considerable discussion about different surgeries going on. I am adopting a little girl with club hands, but she is not home yet. Try: http://health.groups.yahoo.com/group/ClubHand/

    NBIPAKC

    Posted 1 year ago #

  4. juliediane01
    Member

    thank you so much. Good luck with the little angel that your adopting:)

    Posted 1 year ago #

  5. reynms@aol.com
    Member

    Hi, I have a son born in 1994 with a small right arm, and no thumb on either hand. He had pollicizations on both hands. I'd be happy to share with you if you want to email personally. I realize our kids are probaby worlds apart in some ways, but maybe they have something they can share. Sue reynms@aol.com

    Posted 1 year ago #

  6. jim_margo
    Member

    Have you ever posted on the VATER Connection board? There are several young women in their twenties that might be very helpful to your daughter. There's also a teen connection board though I think it tends to be slow. Good luck! -Margo

    Posted 1 year ago #

  7. Momosmom
    Member

    Have you asked her surgeon if he can put her in touch with other young women who have had the procedure? My daughter is only 6, but we have been told (by Shriners) that when she is old enough they will put her in touch with kids who have had it done and kids who opted out, so she can make her decision.

    Posted 1 year ago #

  8. mmegamoo
    Member

    Hi, my name is Meghan and I was born with radial aplasia. I had several surgeries and I do understand how tough kids can be. I am now 27 years old and have two beautiful children. I would be happy to share my experiences with you! Please feel free to email me anytime. mmegamoo@hotmail.com

    Posted 1 year ago #

  9. erincait
    Member

    Hi,
    I was born with radial club hands and had many of the surgeries that your daughter has had. I completely understand what she is going through. It can be very hard to deal with, because you don't feel abnormal and you aren't disabled. You just look different. Which is actually a disability where high school is concerned. I am 23, an artist, and I have many good friends. If she ever needs to talk to someone about everything, you can give her my email address. erin.caitlin.anne@gmail.com or she can go to my myspace (it is easier to get an idea of a person from their personal page)http://www.myspace.com/theemptypage.

    I also have a twin sister who was born completely normal. we are very close and great friends, but it can be hard to have a mirror version of myself minus any deformity.

    Good luck,
    Erin

    Posted 1 year ago #

  10. breesmom06
    Member

    My daughter Bree is 2 1/2 and was born with bilateral radial club hands (completely missing radius on the left and partial on the right)and also has DiGeorge and VACTERL association. Your daughter is the first person I've heard of with both a well. Feel free to contact me. She has had centralization and recently pollicization on both hands. I'd love to keep in touch.

    Thanks, Melissa
    melissagleason4@hotmail.com

    Posted 1 year ago #

  11. nicolepauline
    Member

    Hi. I was surfing the web and ended up finding this. My name is Nicole and i was also born with Radial Club hand, im 16 years old and a junior in high school i have been through many surgery's and i would love to meet somebody else with the same thing as me! Hope everything is well!

    -Nicole.

    Posted 6 months ago #

  12. tpoeela
    Member

    i too was born with this. i am now a junior in high school and 16 years old.. i can pretty much understand how shes feelin... if u wanna talk to me my email is taylor_hsat@yahoo.com

    Posted 6 months ago #

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