Hi, My name is Connie and my son Billy has a leg length discrepancy. I'm interested in talking with other
families/individuals dealing with this issue, both for support and to share information on the latest treatment options.
I have created an online support group on Yahoo, and am trying to get the word out in the cyber community. I am
including a link to the support group above.
My son was born with a leg length discrepancy due to Caudal Regression Syndrome/Sacral Agenesis. He was missing
the left half of his sacrum, and this affected the nerves to the left leg. Because of this, his left leg was smaller,
shorter and was missing muscles and an artery below the knee, and he had a clubfoot.
By age 1, he had a 1cm discrepancy which grew slowly and steadily until he was about 6 years old, and it stabilized at
about 4.5cm for a couple years. Then again, at about age 10, his discrepancy starting increasing again until at age
11.5 it was up to 6cm (he was projected to have a discrepancy of about 9-10cm at full maturity). At this point, due
to his above average risk of complications because of his unique leg anatomy, his doctor decided it was time to do his first
lengthening. He only wanted to aim for 2" (5cm) to allow for as little problems as possible, and get the rest later
There is a link called "Life with a Fixator" above which chronicles our journey through this process, and provides pictures.
I hope it helps others who are going through this, or will be in the future!