Parents Write Book To Help Kids Cope with Arthrogryposis Foot Amputation Surgery
Posted by Jenn F. on Friday, June 3rd, 2016
Life doesn’t always follow our plans, a fact that can be doubly difficult for parents. New Zealand parents Margot and Anton Wuts were devastated upon learning their two-year-old daughter had a birth deformity known as arthrogryposis – a curving of the joints that would require her to undergo a double foot amputation by age four. They worried how the foot amputation surgery would impact her future mobility, and how they’d prepare their daughter for the road ahead.
A Children’s Book to Prepare For Foot Surgery
Margot and Anton wrote Little Jellybean to support other families preparing a child for foot amputation surgery. The book takes readers through the journey of their daughter, Trixy, as she underwent major surgeries after her arthrogryposis diagnosis.
Margot recalls: “At two and a half years old [Trixy] had her first complete foot reconstruction; she could only walk for three weeks before her feet started reverting to the way they were before.” Doctors said she would need the same major surgery every two or three years until her 16th birthday, and at the end of these painful operations, Trixy would have very small feet that lacked normal function. The family decided that amputation and prostheses would help their daughter get around better.
Now, at age nine, Trixy can walk around on her stumps or with her prosthetic devices. Five years after surgery, she is able to participate in dance and gymnastics. She outgrows her prostheses every seven or eight months and looks forward to having special sets designed for wearing high heels, running, and swimming.
What Is Arthrogryposis?
Arthrogryposis is a condition affecting 1 in 3,000 babies. A child born with arthrogryposis suffers from joint contractures – meaning that some of their joints don’t move as much as normal or are stuck in one position, which causes muscle weakness or thinning. Sometimes the muscles surrounding these joints are missing entirely.
Arthrogryposis is caused by abnormalities in fetal muscles and connective tissues which lead to decreased movement of the fetus in the womb. The condition is typically discovered during ultrasounds or sometimes at birth. It’s believed that maternal infection, drug use, trauma, or illness may play a part in its development. It is also possible that the mother has an abnormally small uterus that does not allow for sufficient movement. Some cases also run in families, suggesting a genetic component.
There is no successful treatment approach to date. Doctors focus on lower limb alignment and upper limb strengthening to help patients get around. Early gentle manipulation of the joints after birth has been shown to improve range of motion.
While the Wuts family opted for foot amputation surgery, there are a few other surgery options as well:
- Open reduction is most often done in older children to return dislocated or misshapen joints back into place.
- Tenotomy can be done to release overly tight tendons and enable better range of motion.
- Osteotomy is performed to cut or realign the bones surrounding the affected joint, allowing better limb alignment.
- A cast and braces can be also used following osteotomy or reduction and helps keep the bones in their proper position, as well as correcting joint damage as the child grows.
The course of treatment naturally depends upon the severity of each child’s condition, which can be assessed through x-rays and ultrasounds. Working with a specialist will give parents and their children the best access to assistive therapy devices and emotional support networks to get through this challenging diagnosis.
NYC Arthrogryposis Help & Support
The Hospital for Special Surgery may be the first name that comes to mind for surgery, but The Center for Podiatric Care and Sports Medicine provides additional treatment for children with foot deformities in NYC. Sometimes you can’t afford to wait and you want top-of-the-line care now. We offer personalized service, a team of highly knowledgeable foot specialists, and a full physical therapy program. Contact us for details.
If you have any foot problems or pain, contact The Center for Podiatric Care and Sports Medicine. Dr. Josef J. Geldwert, Dr. Katherine Lai, Dr. Ryan Minara and Dr. Mariola Rivera have helped thousands of people get back on their feet. Unfortunately, we cannot give diagnoses or treatment advice online. Please make an appointment to see us if you live in the NY metropolitan area or seek out a podiatrist in your area.