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Arthrogryposis

Arthrogryposis (also called arthrogryposis multiplex congenital) is a condition in which a baby is born with joint contractures. This means a loss of movement, or a smaller range of motion, in the joint.

Normally, joints have stretchy tissue. If there is a contracture, this tissue is replaced by a “non-stretchy” tissue. Without the stretchiness, joints may have a limited range of movement. If extra tissue forms around the joints, they may even be “locked” into place.

About 1 in 3,000 babies is born with arthrogryposis. Fortunately, it’s not progressive, meaning it doesn’t get worse over time. With the right treatment, most children born with arthrogryposis can lead healthy, productive lives.  

Symptoms

Almost all children with arthrogryposis have trouble moving the affected joints. But other than that, symptoms may vary from case to case.

Some of the main signs and symptoms include:

  • Stiff joints due to extra tissue
  • Limited or no movement of the joints
  • Joints that seem to be locked into place
  • Thin, weak, or missing muscles
  • Abnormal appearance of joints (e.g., sloped shoulders, extended knees)

Causes

Arthrogryposis is congenital, meaning it’s present at birth. It’s usually caused by fetal akinesia, where a baby doesn’t move around the womb as much as normal. This can happen because:

  • The baby’s nervous system isn’t developing normally.
  • The baby doesn’t have enough room in the womb to move around.
  • The baby’s muscles, tendons, bones, or joints aren’t forming normally.

In about 30% of all cases cases, physicians find a genetic link to arthrogryposis.

While movement can be a little uncomfortable for a mom-to-be, it’s actually very important. Movement helps the fetus’s tendons, bones, and muscles develop, and lack of movement can stand in the way. It can also cause extra tissue to grow, limiting joint movement once the baby is born.

 

Diagnosis

If a physician thinks a child has arthrogryposis, she will look at how the joints formed and are affected. She may need to take pictures of the joints—using X-ray, MRI, or computed tomography (CT) scans—to confirm the diagnosis.

Sometimes, arthrogryposis can actually be a feature of a more complex condition. The physician may want to give the child a blood test to determine the severity of the arthrogryposis.   

Prevention

Currently, there is no known way to prevent arthrogryposis. Since it usually develops in the womb, pregnant women should talk to their gynecologists or obstetricians to see if there are any steps they can take to increase the likelihood of healthy development in their babies.

The OIC Arthrogryposis Team

At OIC we draw from a wide range of experts and expertise in order to help your child with his or her arthrogryposis. If you come to OIC for help, your team could include:

The Pediatric Orthopaedist specializes in the musculoskeletal system of children. They provide surgical interventions when necessary such as tendon lengthening.

The Pediatrician reviews medical issues and coordinates the general healthcare of the patient, in addition to working with the orthopaedic surgeon for pre-operative assessments if surgery is indicated and overseeing medical issues for hospitalized patients.

The Nurse Coordinator assists in making sure all medical orders are carried out, and provides case management and nursing assessment for the patient. 

The Orthotist works with the team to prevent unequal or unbalanced muscle groups which can lead to deformities as the child grows.

The Cast Technician helps ensure that the casts and casting regimen your child requires is managed carefully and effectively to ensure that patients heal properly.