Because the condition is relatively rare, few health care providers have seen or treated it extensively, Barnes said. Douglas Barnes, M.D., Assistant Chief of Staff at the Houston Shriners Hospital, applies splints and tape to hel a young patient. Along with daily exercises that gradually stretch the affected joins, taping and splinting help hold the loosened joints in plcae and prevent them from reverting to their original position. While their joints are constrained in utero, extra protective fatty and fibrous tissue grows around the joints, fixing them in position. Lack of joint movement in the womb also prohibits the tendons that connect the joints from being stretched to their normal length.
Short tendons make joint movement difficult.
Mothers of children with arthrogryposis often report that their babies were unusually still during gestation. Something was wrong. Having lost two other children to a devastating genetic disease called Krabbe syndrome that causes the brain to shut down and die by age one, Martha couldn't help but wonder if Peter was affected as well. Prenatal tests came back negative, but still, something was wrong. Only when Peter was born was the diagnosis of arthrogryposis clear.