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Hand and Upper Extremity Program
Arthrogryposis
Kids aren’t just mini adults. In fact, they’re incredibly different. That’s why they need incredibly different care.
What is arthrogryposis?
Arthrogryposis (also called arthrogryposis multiplex congenita or AMC) is a condition that causes unusually rigid joints and short, tight muscles. Children born with arthrogryposis may have multiple joints that don’t fully bend or extend or that are permanently fixed in one position.
These joint contractures (stiffness) most often affect joints in the arms and legs but can happen in other joints too. It can affect a few joints or many. The more joints affected, the more severe the condition.
The condition begins during pregnancy as the baby develops and may be diagnosed before or after birth.
Arthrogryposis isn’t a specific disease. The term describes a group of symptoms that may result from a variety of conditions, including neurological conditions or connective tissue disorders. In many cases they also have amyoplasia, another condition that leads to joint stiffness.
How common is arthrogryposis?
Arthrogryposis is a rare condition that affects about 1 out of every 3,000 babies. It is a congenital condition, meaning it is present at birth.
What causes arthrogryposis?
The cause of arthrogryposis is not known, but there are a few potential causes including:
- A viral infection while the baby was growing in the mother’s uterus
- The central nervous system and/or muscular system not developing normally during pregnancy
What are the complications of arthrogryposis?
Joint issues most commonly affect the arms, legs, hands and feet. But in some cases, they also affect the jaw and spine.
The condition ranges in severity. Children with more affected joints may have very limited mobility. Ninety percent of children with arthrogryposis have clubfoot (feet twisted so the sole cannot be placed flat on the ground). In most cases, children with arthrogryposis have typical mental development.
What are the signs of arthrogryposis during pregnancy?
During pregnancy, decreased fetal movement can be a sign of arthrogryposis. If joints and muscles aren’t developing properly, the baby won’t be able to move around in the uterus as much as typical.
What tests are used to diagnose arthrogryposis during pregnancy?
Your obstetrician may recognize signs of arthrogryposis during a routine ultrasound. If they suspect the baby has joint contractures, you may need a more detailed fetal ultrasound to closely examine the extremities and look at the position of the joints.
Some babies with arthrogryposis develop extra fluid in the skin (a condition called cystic hygroma). You may also have excess amniotic fluid surrounding the baby in your uterus (a condition called polyhydramnios). Fetal ultrasound can detect these complications.
What can I expect after a diagnosis of arthrogryposis during pregnancy?
If your baby is diagnosed with arthrogryposis, the experts at our Colorado Fetal Care Center will monitor your pregnancy more closely. You may need additional testing to rule out other possible medical conditions — such as muscular dystrophy and myasthenia gravis.
How is arthrogryposis diagnosed in children?
In some cases, arthrogryposis isn’t spotted during pregnancy. But your baby’s doctor can usually diagnose it during an early physical exam. In order to make the most accurate diagnosis, your doctor may also order tests such as:
- X-rays
- Ultrasound
- MRI (to see if any organs in the body are affected)
- CT scan
- Biopsy (small tissue sample) of a muscle to see if the muscle fibers are normal
- Blood tests to look for any gene variations or atypical chromosomes that may indicate another disease
How is arthrogryposis treated during pregnancy?
Other than closely monitoring your pregnancy and your baby’s development, there is no treatment for arthrogryposis during pregnancy.
How is arthrogryposis treated in babies and children?
Your baby will have a thorough physical examination at birth to see which limbs are affected. We’ll also check to see if the condition is affecting their central nervous system or any internal organs. We’ll test the range of motion in their joints, examine the joints’ positions and look for any fractures.
Treatment depends on how many joints are affected and how severely. During the newborn period, we may use casts or splints to help reset joints. Physical therapy and gentle stretching can also help babies improve muscle strength and range of motion.
Hand therapy is an important part of treatment for children with arthrogryposis. Our pediatric hand therapy program includes experts highly trained in this specialty. We typically start hand therapy soon after your baby is diagnosed.
If therapy alone is not enough, your child may need surgery. We perform surgery to improve how your child’s joints move and work. Our pediatric orthopedic surgeons typically are involved early in a child’s care, as surgery may help improve a child’s function.
What is the outlook for children born with arthrogryposis?
Arthrogryposis is non-progressive, which means it doesn’t get worse over time. Most people with arthrogryposis live long, healthy lives.
With treatment, most children improve their range of motion and ability to move their arms and legs. This means they are better able to enjoy activities of daily life.
Why choose us for treatment of arthrogryposis?
At Children’s Hospital Colorado, our maternal fetal medicine specialists are experts at caring for expectant mothers with high-risk pregnancies. Our team includes specially trained fetal radiologists and sonographers experienced in diagnosing arthrogryposis during pregnancy.
Our surgeons and hand therapists are specially trained to care for babies and children with arthrogryposis. Our Arthrogryposis Clinic, part of our Hand and Upper Extremity Program, is the only dedicated clinic of its kind in Colorado and the region.
Our team of specialists includes pediatric orthopedic surgeons, rehabilitation physicians, physical and occupational therapists and social workers. Together, they create an individualized treatment plan specific to your child’s needs.
And because we only treat children, everything we do is scaled to them. We have operating rooms and testing equipment specifically designed to fit even the tiniest patients.
Make an Appointment
To learn more about the Hand and Upper Extremity Program or to make an appointment with an orthopedic specialist, call 720-777-6600.
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Get to know our pediatric experts.
Sarah Sibbel, MD
Orthopaedic Surgery, Hand Surgery
Frank Scott, MD
Hand Surgery
Cailin Delaney, PA-C
Physician Assistant