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:
- Shoulders rotated inward (making it hard to lift the arms).
- Elbows extended and stiff, or sometimes stuck in flexion.
- Wrists and fingers flexed or extended abnormally (e.g., wrists bent inward,
fingers curled). - Hips may be dislocated or stuck in a bent (flexed) position.
- Knees often hyperextended (over-straight) or less commonly fixed bent.
- Feet almost always affected, often as clubfoot (feet pointed down and in).
- Spine is typically not the main issue in classic AMC, though severe cases can
have a curved spine or a stiff spine.
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.
- Soft Tissue Releases: These are surgeries to release or lengthen tight
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.