Monday, June 6, 2011

Hand Surgeon Appt.

We had an appointment today with Macy's hand surgeon.  It looks like she is going to have her 1st hand surgery around when she turns 1 (in sept.), and the 2nd hand can be about 2 months later.  Her Dr. suggested doing the more severe one first which is her left hand.  She has what we call a "floppy" thumb.  It is technically a category 4 hypoplastic thumb.  Anywho, this means her thumb itself is present; however, she is missing her metacarpal bone (the bone that goes from the base of your thumb to your wrist), and she is missing all the joints, thenar muscles, and tendons.  So her thumb doesn't work and it is only attached to her hand by a little teeny piece of skin.  She has no movement in it and it just flops around.  Because she is missing so many parts, specifically her joints; there is no way her thumb can be reconstructed.  Our only options are to do nothing; but then she wouldn't have a thumb and a huge part of your hand being functional is having a thumb, so.......we are doing option #2.  Index Pollicization sugery.  This is where they take your index finger and move it over and make it into a thumb.  She will still only have a 4 fingered hand but atleast she'll have a functional hand.

Her right hand her thumb is also hypoplastic; but is a category 3.  She is not missing any parts, but it is attached like all the other fingers on the hand so when she bends it it bends down instead of in an opposing direction like a thumb should for pinching and grasp.  Her MP joint is also weak so when she puts pressure on her thumb it just bends the other way.  But she does have movement and some function in this thumb right now.  She has adapted pretty well.  For this surgery she will have to have the web space deepened between the thumb and hand, her thumb will need to be rotated, and she will have to have tendon transfers to strengthen her MP joint.  That thumb will always be weaker than a normal thumb but alteast it will be there and working.

Her hand surgeon and I discussed the possibility of wrist centralization surgery first.  There is no way he will know if she needs this until they are in the OR.  Normally they would do xrays to see but since xrays are dangerous for her to have (since she is so cancer prone) he is going to make the call when they are doing the surgery.

Macy's next appt. is Wed.  We will be meeting with her Nephrologist (kidneys), she will be getting a kidney ultrasound to make sure her kidneys are still functioning and growing correctly, and she is getting an echocardiagram done on her heart to make sure she doesn't have any structural defects.


  1. How do you know if you are someone that can donate or help?

  2. Hi Loretta! Thank you for visiting Macy's blog. If you go to they can send you a kit to your home to be tested, (just a mouth swab) and can put you on the bone marrow donor registry if you wish. The Fanconi Anemia Research Fund (FARF) is the leading organization in the USA that funds research to try and find a cure for Fanconi Anemia. Their website is Teresa Kennedy is a great contact there that can assist you if are interested in finding a way to help, but not quite sure what to do. Thank you so much for your interest, and please let me know if you have any other questions.
    Jenn (Macy's mom)