Children's Hospital Colorado

Arthrogryposis

What is arthrogryposis?

Arthrogryposis is a rare condition that involves stiff or contracted joints. The condition is also called arthrogryposis multiplex congenita (AMC).

  • The name arthrogryposis comes from the Greek language, for curving or hooking of joints.
  • Multiplex means there are at least two joint contractures.
  • Congenita means the condition is present at birth.

A joint contracture occurs when muscles, tendons or other tissues get short and stiff, preventing the joints from moving normally. Joint contracture is most common in the arms and legs, but it can happen in other joints too. It can affect a few joints or many; the more joints affected, the more severe the condition.

What causes arthrogryposis?

The cause of arthrogryposis is not known, but there are a few potential causes including:

  • A baby not being able to move fully while in the mother’s uterus
  • A viral infection while the baby was growing in the mother’s uterus
  • The central nervous system and/or muscular system not developing normally while the baby was growing in the mother’s uterus

What tests are used to diagnose arthrogryposis?

Before a diagnosis is made, the doctor will often order tests such as:

  • X-Rays
  • Ultrasound
  • MRI (Magnetic Resonance Imaging) to see if other organs of the body are affected
  • CT (Computerized Tomography)
  • A biopsy, where a small amount of issue taken to be studied, of a muscle might be done to look at the fibers of the muscles to see whether they are normal or not
  • Blood might be taken to look at the chromosomes to determine if there is a problem with them

How is arthrogryposis diagnosed?

Arthrogryposis is usually diagnosed through a physical examination by a doctor. Sometimes, the condition is diagnosed through an ultrasound before a baby is born. The tests help diagnose the injury and help the doctor decide the best treatment.

What is the treatment?

The main treatment for arthrogryposis is therapy. Therapy can be done by an occupational therapist, a physical therapist or both. Therapy usually starts soon after a baby is diagnosed with the condition and may include stretching, range of motion exercises, splinting or casting and assisting with normal every day activities.

Therapists at Children’s Hospital Colorado work with families/caregivers to create a program for each child under the direction of the doctors.

If therapy alone is not enough, some children may need surgery. Surgery is usually done to improve how the joint moves and works. These surgeries may involve the bones, joints, tendons, muscles or other tissues.

What does this condition mean long-term for my child?

Most people with arthrogryposis will live a long life. If the condition is severe and affects the brain and spine, your child may have a shorter lifespan.

Arthrogryposis is non-progressive, which means it doesn’t get worse over time. With treatment, things can improve. Most children will improve their range of motion and ability to move their arms and legs, and do activities of daily life. With therapy, the contractures often improve dramatically.

Why choose Children’s Colorado for your child’s arthrogryposis treatment?

At Children’s Colorado, our surgeons and hand therapists are specially trained to care for children and babies with this condition. Our Arthrogryposis Clinic, part of the Hand and Upper Extremity Program, is the only dedicated clinic of its kind in Colorado as well as the region. Our team of specialists will develop an individualized treatment plan for each child.

The Arthrogryprosis Clinic provides:

  • Pediatric orthopedic surgeons, rehabilitation physicians, pediatric nurses physical and occupational therapists and social workers who work together to treat all aspects of the child’s health
  • Individualized treatment plans that treat each child’s condition and specific needs
  • State-of-the-art multidisciplinary clinic, operating rooms and testing equipment that is designed to fit the child’s needs
  • Access to child life specialists and social workers that help families emotionally and mentally
doctor holds childs hand

Healing Leela’s Arthrogryposis with Hand Therapy

“The amounts of care, knowledge and expertise at Children’s Colorado – as well as the human quality interactions – have been amazing.” Jen, Leela's Mom

Read Leela's Story

Learn more about our Hand and Upper Extremity Program at Children’s Colorado.


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