UNDERSTANDING ARTHROGYPOSIS
Hannah-Roses left foot at around 3.5 months her big toe is super flexed
The name Arthrogryposis comes from Greek arthro meaning joints, and gryposis meaning curved. It’s a word that sounds complicated, almost scary, but at its core, it simply describes stiff or curved joints. For us, it’s the word that first knocked the wind out of me, the word that entered our lives and changed everything.
When Hannah-Rose was diagnosed, it wasn’t just a medical term. It was a label that came with fear, confusion, and a thousand unknowns. What I learned quickly is that understanding it doesn’t make it any less overwhelming, but it does give you something solid to hold onto something to guide you through the uncertainty.
Arthrogryposis isn’t one condition. It’s a group of conditions that all involve joint contractures at birth that means the joints are stiff or fixed because the muscles and tendons didn’t develop the way they should before birth. There are more than 400 types, each different, but all of them share one thing in common: they start before birth, and they don’t get worse over time. With the right therapies, exercises, and sometimes surgeries, children can grow stronger and move better than anyone initially expected.
The three main types are:
Amyoplasia: This is the most common type and the one Hannah-Rose has. It usually affects the arms and legs, where muscles didn’t fully form in the womb. This leads to stiffness, weak muscles, and joints that can’t move fully at first.
Distal Arthrogryposis: This mainly affects the hands and feet. Fingers and toes can be tight or bent, but often the larger joints are less affected.
Syndromic Arthrogryposis: This type occurs alongside other genetic or developmental conditions. The symptoms and severity can vary a lot because it’s part of a larger syndrome.
The causes aren’t simple. Sometimes it’s genetic. Sometimes it’s linked to how the baby moves or doesn’t move in the womb. Sometimes it’s just a combination of factors no one can fully explain. It’s important to know that no one is to blame. Nothing you did, nothing your child did, caused it. It just happened.
Understanding arthrogryposis also means understanding what it isn’t. It isn’t contagious. It isn’t something that will suddenly get worse. And it doesn’t define who your child is or what they can achieve. That’s hard to remember in the beginning, when doctors are listing what your child “won’t do.” But it’s true. And just as important doctors are not always right. Trust your gut, your intuition, every single time. You know your child better than anyone.
Some common questions parents ask, and what I’ve learned to answer:
1. What is arthrogryposis?
It’s a condition where multiple joints are stiff or fixed at birth. The joints can’t move like a typical joint because the muscles didn’t develop fully or the tendons are tight. This affects how children move, sit, crawl, or walk. It’s often visible right away, but sometimes it’s diagnosed after birth if the stiffness is subtle.
2. What causes it?
Causes can include genetics, limited movement in the womb, or unknown factors. It isn’t caused by anything a parent did, and it’s not preventable. Each child’s situation is unique, which is why families need individualized care plans.
3. Can it get worse over time?
No. Children are born with arthrogryposis, and the condition doesn’t worsen. The joints won’t deteriorate like arthritis might. That said, movement and function can improve dramatically with therapy, stretching, and sometimes surgery.
4. Can children walk?
Many do. Some use braces or walking aids, some walk independently. The focus is on movement and independence, not comparison to other children. Every child’s abilities are different, and every step forward is worth celebrating.
5. What therapies help?
Physiotherapy is essential. Stretching, hydrotherapy, and guided exercises strengthen muscles and improve joint range of motion. Casting or splints are often used to gradually lengthen tendons or support weak joints. Surgeries can help with alignment and function, but every child’s plan is unique.
One of the most incredible things I’ve learned through this journey is how resilient children with arthrogryposis are. They don’t just survive they adapt, fight, and find their own way. Yes, it may look different from what we expect, but they are smart and strong, and they always figure out how to make life work for them. That resilience isn’t just physical it’s mental, emotional, and astonishing. Watching Hannah-Rose push herself, try new things, and refuse to be limited has taught me more about strength than anything else in life.
Learning about these therapies early is crucial. They give your child the tools to move, play, and grow with as much independence as possible. But what’s just as important is believing in your child’s potential, even when it seems impossible. And always remember your intuition is everything. You feel what your child needs, you know their fight, and you must trust yourself every step of the way.
Support and community make all the difference. You don’t have to navigate this alone. The families I’ve met, the mothers I’ve spoken to, the groups I’ve leaned on they’ve been lifelines.
Understanding arthrogryposis isn’t about memorizing medical terms or percentages. It’s about seeing your child for who they are stubborn, brilliant, brave and helping them grow stronger every day. They may face challenges, yes, but they also discover ways to do things that nobody predicted, because they are smart, strong, and unstoppable.
The word arthrogryposis will always carry weight for me, but it no longer carries fear. It carries truth, resilience, and the start of a journey we are taking together, step by step, kick by kick.
This notebook is the beginning of recording that journey for Hannah-Rose, for families just starting, and for anyone who needs to see that children with arthrogryposis aren’t defined by limits. They’re defined by courage, resilience, and the endless ways they find to live life fully. And always, always, trust your gut you know your child better than anyone.