Receiving a diagnosis of Arthrogryposis Multiplex Congenita (AMC), often simply called arthrogryposis, can be overwhelming for parents. Arthrogryposis is not a single condition, but rather a descriptive term meaning a child is born with multiple joint contractures (stiff joints that can’t move through the normal range). This occurs because the baby’s joints did not move properly in the womb, often due to decreased fetal movement from various causes. As a result, at birth, a child might have very stiff knees, elbows, wrists, or clubfeet, for example. The immediate questions from parents are usually: Will my child ever walk? Will they be able to use their hands? What treatments are available? The good news is that, although arthrogryposis has no outright cure, there are many treatments that can significantly improve a child’s flexibility and abilities. Children with arthrogryposis can and do learn to sit, stand, play, and even walk in many cases. It takes a dedicated, coordinated care plan, often involving therapy and sometimes multiple surgeries. Importantly, our approach is filled with hope and empathy: we set realistic goals but always strive to help each child reach their maximum potential in mobility and independence. This blog will discuss what arthrogryposis is, the typical orthopedic challenges it presents, and the range of treatment options (from casting and bracing to surgeries). We will emphasize a compassionate, family-centered approach and share how careful planning leads to successful outcomes. Seeing children with arthrogryposis grow into active preschoolers and confident teens is one of the most rewarding aspects of our practice.
What is Arthrogryposis?
Arthrogryposis (full name Arthrogryposis Multiplex Congenita, meaning “curving of joints in many areas, present at birth”) describes a condition where a child is born with stiffness or contractures in two or more different body areas. For example, a classic presentation is a baby with stiff extended knees, hips that may be dislocated, clubfeet (feet turned inward and downward), and wrists bent inward. There are over 400 different causes and types of arthrogryposis – sometimes it’s part of a syndrome or due to a neuromuscular condition, but often an exact cause isn’t identified, and it’s considered amyoplasia, meaning the muscles around those joints didn’t develop well. The unifying feature is that because the joints didn’t move normally during development, the connective tissues around them (tendons, joint capsules) became tight and fixed. Arthrogryposis is rare (occurring in about 1 in 3,000 to 1 in 5,000 live births). It’s non-progressive, meaning it doesn’t get worse over time – in fact, with treatment, it often greatly improves. Children with the most common type (amyoplasia) typically have normal intelligence and no internal organ problems; their challenges are primarily orthopedic and muscular. Some other types (called distal arthrogryposis) might only affect the hands and feet with milder contractures, whereas more severe syndromic forms can involve nearly every joint and sometimes the jaw and spine.
Common Joint Findings in Arthrogryposis:
Despite these physical challenges, a child with arthrogryposis is typically very engaged mentally and eager to explore their environment – they just need our help to enable their body to do so. It’s crucial to start intervention early, often within the first days of life, to take advantage of babies’ flexibility and neuroplasticity. That said, improvements can be made at any age with the right plan.
Goals of Treatment: Mobility and Independence
Before diving into specific treatments, we always discuss goals with the family. In arthrogryposis, the overarching goal is to help the child’s joints move as normally as possible, to maximize their ability to interact with the world. More specifically:
For the lower body: the focus is on getting the child’s legs and feet positioned so that standing and walking can be achievable. This might mean straightening out a knee that’s stuck or correcting a clubfoot so the foot can plant flat on the ground.
For the upper body: the focus is on improving arm and hand function so the child can do things like feed themselves, play, and eventually dress themselves. For example, we might aim to increase elbow bending so they can bring a hand to their mouth.
Each child may have personal goals too – perhaps by school age, using the toilet independently, or by teen years being able to use a computer or drive with adaptations. We frame our treatment plan around enabling these milestones. A key thing to understand: No completely “perfect” fix exists yet for arthrogryposis. Because the underlying problem (like missing or weak muscles) remains, our interventions revolve around improving mechanics: we align the bones correctly, we lengthen or transfer tendons to improve motion, and we support with braces. We often say it’s a marathon, not a sprint. There is typically a sequence of treatments as a child grows – early aggressive therapy and casting, followed by surgeries at optimal times, and ongoing therapy. It requires patience and persistence, but these kids are some of the most resilient around! Crucially, we involve the whole family and a multidisciplinary team. Achieving mobility goals in arthrogryposis is absolutely a team effort. Parents, therapists, orthopedic surgeons, rehab physicians – everyone plays a role, and the child’s own determination is central. Family-centered care means we plan treatments in ways that consider family logistics and stressors. For example, if multiple surgeries are needed, we try to combine procedures or schedule them to minimize time away from home or work. We reassure families that progress is possible and even likely with the right care. We’ve seen children with arthrogryposis become active preschoolers, gymnasts, and socially confident teens. We’ve experienced the same: children who many thought would never walk sometimes do take steps with braces; others who might not walk can still gain independence using wheelchairs and having good arm function. The spectrum is wide, but there is a place on it for every child to improve and shine.
Treatment Options: Therapy, Bracing, Casting and Surgery
Early intervention is the cornerstone. Right after birth, once arthrogryposis is identified, gentle stretching exercises and casting often begin within the first week or two of life. Babies are surprisingly adaptable, and early treatment takes advantage of the relative flexibility of newborn tissues (even if joints are stiff, they’re generally more pliable at a few days old than months later). Here are the mainstays of treatment:
Physical and Occupational Therapy: This is a continuous thread throughout childhood. In the early months, therapy focuses on stretching contractures (to increase joint range of motion) and stimulating muscle activity. Therapists teach parents stretching routines – for instance, doing several reps of bending the knee or elbow gently multiple times a day. Early, gentle, and frequent stretching can significantly improve passive range of motion. We caution not to be too forceful; a knowledgeable therapist is key because overly aggressive therapy in the wrong areas (like a joint that is fused or has abnormal bony structure) could cause harm. In arthrogryposis, consistency is more important than intensity – those daily stretches and positioning exercises prevent contractures from worsening and often improve them. As the child grows, physical therapy (PT) helps with gross motor skills like sitting, rolling, and eventually standing, using the improved range we’ve achieved. Occupational therapy (OT) focuses on the upper body: helping the child learn to use what motion they have in arms and hands to perform tasks, and finding adaptive ways to do things (like using wrist flexion to bring a hand to mouth if the elbow doesn’t bend well, etc.). Therapists might use tools like splints, adaptive utensils, or mobile arm supports. Even after surgeries, therapy continues to solidify gains.
Stretching and Serial Casting: For specific joints, we often use serial casting to progressively improve position. The most common example is the feet. Virtually all arthrogryposis babies with clubfoot will undergo serial casting (Ponseti method) starting in the first weeks of life. Each week, the foot is gently stretched and a cast is applied to hold the new position, gradually moving the foot toward the correct alignment. This might take 6-8 casts, and often a small procedure to release the Achilles tendon at the end (as is standard in clubfoot treatment). Similarly, if knees are stuck in flexion, extension casting can be done, or vice versa if knees are hyperextended, casting can gradually bend them. We also use splints a lot: for example, removable splints for wrists or knees that parents can put on at night to keep a good stretch. Many children get night splints after initial casting or surgery to maintain improvements. Splinting combined with PT is often preferable to continuous casting once initial gains are made, so that the child can still move and strengthen during the day.
Bracing and Assistive Devices: As the child gets older and attempts to stand or walk, orthotic braces become important. For instance, if the feet have been corrected but the child has weak muscles, Ankle-Foot Orthoses (AFOs) will support the ankles in the correct position for standing. If the knees tend to buckle or hyperextend, a knee-ankle-foot orthosis (KAFO) can stabilize them to enable standing/walking. Some children with very weak lower limbs might use standing frames or gait trainers to help them practice weight-bearing safely. For the upper limbs, there are devices like dynamic elbow splints that can help gradually increase bending. There are also ingenious gadgets like mobile arm supports that attach to a wheelchair or chair and use springs to help a weak arm move in space – beneficial for kids who can’t lift their arms against gravity. Adaptive equipment is part of the treatment palette: from specialized strollers to power wheelchairs (for those who won’t be able to walk independently, having a power chair early can give tremendous mobility), to bathing and toilet aids for home.
Surgery: Despite aggressive therapy and casting, most children with arthrogryposis will benefit from some surgical interventions to achieve the best function. Surgery is generally recommended when a deformity is severe enough that it significantly limits function even after conservative treatments, and when the child is medically and size-wise an appropriate candidate. Common surgeries include:
Soft Tissue Releases: These are surgeries to release or lengthen tight tissues. For example, posterior knee releases to gain more knee flexion (or extension, depending on need), elbow releases (lengthening or moving the biceps tendon if elbow won’t bend), or wrist/finger releases. Tenotomies (tendon cuts) or muscle lengthenings fall in this category. One frequent procedure is Achilles tendon release for clubfoot – often done percutaneously in infancy as part of Ponseti casting.
Osteotomies and Bony Procedures: Sometimes joints are in such a fixed, malformed position that bone adjustments are needed. For instance, in a foot that remains very rigid or a hip that’s malformed, an osteotomy (bone cut to reposition) might be done.
Muscle/Tendon Transfers: In some cases, we can re-route muscle tendons to substitute for a missing function. These surgeries require a certain level of strength to begin with, so they’re considered on a case-by-case basis.
Limb Lengthening or Amputation: These are less common but in extreme cases considered. We emphasize this is uncommon and usually we try everything to avoid such steps, but we always prioritize the child’s functional ability over the form.
The Team Approach and Family Support
Treating arthrogryposis is truly a team effort, and families are the captains of that team. We practice family-centered care, meaning we actively involve parents (and when appropriate, the child) in decision-making at every step. Our team usually includes pediatric orthopedic surgeons, physical and occupational therapists, pediatric physiatrists, orthotists, nurses and care coordinators, social workers, and geneticists/neurologists when necessary. We recognize that families of children with arthrogryposis can face stressors such as frequent medical appointments, concerns about the child’s future, and decision fatigue when presented with multiple options. We aim to be not just providers but partners and supporters. Every success builds confidence for the child and family.
Success Stories and Long-Term Outlook
While arthrogryposis is challenging, the long-term outlook with proper care is often far better than families initially fear. Many children with arthrogryposis grow up to be independent in daily activities, attend regular schools, and pursue hobbies and careers. They may do some things differently or need adaptive equipment, but they thrive. We’ve seen children who many thought would never walk sometimes do take steps with braces; others who might not walk can still gain independence using wheelchairs and having good arm function. With careful patient selection for surgeries, children with arthrogryposis can achieve successful outcomes, progressing from limited movement to engaging with the world in their unique ways.
For a comprehensive evaluation and to explore your treatment options, don’t hesitate to schedule an appointment or seek a second opinion consultation with Dr. Arun Hariharan at Paley Orthopedic & Spine Institute by calling (561) 602-9155.
