What Is Arthrogryposis?
A child with contractures that bend their fingers, hand and wrist.
Arthrogryposis (arth-ro-grip-OH-sis) means a child is born with joint contractures. This means some of their joints don't move as much as normal and may even be stuck in one position. Often the muscles around these joints are thin, weak, stiff or missing. Extra tissue may have formed around the joints, holding them in place.
Most contractures happen in the arms and the legs. They can also happen in the jaw and the spine.
Arthrogryposis does not occur on its own. It is a feature of many other conditions, most often amyoplasia. Children with arthrogryposis may have other health problems, such as problems with their nervous system, muscles, heart, kidneys or other organs, or differences in how their limbs, skull or face formed.
This condition is also called arthrogryposis multiplex congenita. "Arthrogryposis" means the joints are curved or crooked. "Multiplex" means it affects more than one joint. "Congenita" means the condition is present at birth.
Arthrogryposis in Children
About 1 baby in 3,000 is born with arthrogryposis.
Each child with arthrogryposis is different. In some children, the condition is mild. It affects only a few joints, and these joints have almost as much movement as normal. In other children, the condition is more serious. It affects more joints and restricts their movement more. In extreme cases, arthrogryposis affects nearly every joint.
What to expect
Arthrogryposis does not get worse over time. For most children, treatment can lead to big improvements in how they can move and what they can do.
Most children with arthrogryposis have typical cognitive and language skills. Most have a normal life span. Most lead independent, fulfilling lives as adults. However, some need lifelong help with daily activities. Some walk, and others use a wheelchair.
The main cause of arthrogryposis is fetal akinesia. This means the baby does not move around inside the womb as much as normal. Starting in early pregnancy, moving helps a baby's joints, muscles and tendons develop. If a baby doesn't move much, these parts may not develop well, and extra tissue may form in the joints, making movement harder.
There are many reasons why fetal akinesia might happen, including:
- Nerve signals don't reach the baby's muscles because of problems with the baby's central nervous system (CNS).
- There isn't enough room inside the womb for the baby to move. This may happen if the womb is not the typical shape or if amniotic fluid leaks out of the womb (oligohydramnios).
- The baby's muscles don't form normally and are weak, or their tendons, bones or joints don't form normally.
Fetal akinesia usually has nothing to do with what the mother did or did not do while she was pregnant.
Most families who have a child with arthrogryposis are not at greater risk for having another child with it. In about one-third of children with this condition, doctors do find a genetic cause. The families of these children may be at greater risk. Your child's doctor can explain what this means for your family.
Arthrogryposis at Seattle Children's
The Seattle Children's Arthrogryposis Clinic includes experts in Rehabilitation Medicine, Physical and Occupational Therapy, Education, Genetics, Orthopedics, Nutrition and Social Work. We work as a team to evaluate your child's abilities and recommend a plan to help your child become as active as possible.
Treatment is tailored to your child and family. Our team members use the latest methods to increase your child's range of motion, muscle strength and skills. As your child grows, we adapt their treatment to meet their changing needs. Along the way, we consider all aspects of what your child and family need to thrive - from learning practical skills for daily life to coping with feelings.
Every quarter, Children's Rehabilitation staff host a midday lunch for families who have children with arthrogryposis. These lunches happen during our quarterly Arthrogryposis Clinic dates. They are a time to meet other families, share a meal and learn from staff and each other.
The Arthrogryposis Clinic team also provides prenatal consultations if an ultrasound before birth shows that your baby may have arthrogryposis.