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Our award-winning, internationally recognized physicians treat even the most challenging cases.

Every year, roughly four of every 10,000 babies will be born with an upper limb deficiency, while two in every 10,000 will be born with a lower limb deficiency. Some babies are born with both. Limb deficiency occurs when part or all of a child's limb does not completely form during pregnancy or as a result of a major injury.

There isn't one known cause of limb deficiencies that occur at birth, and the condition can vary widely from child to child. The truth is that researchers are still working toward understanding the causes.

Treatment at Shriners Children's

The Shriners Children's physicians who treat pediatric limb deficiencies practice a highly specialized area of health care. Here, we believe in collaborating with families to build personalized treatment plans tailored to each child's needs. We take into consideration the child’s age, the severity of the discrepancy and the child’s ability to participate in the treatment plan.

Treatment options may include limb lengthening, physical therapy,  occupational therapy and, in some cases, amputation.

When you come to Shriners Children's, your child may be seen be our master prosthetists or orthotists. These craftspeople are specially trained to work with children and collaborate with physicians and rehabilitation therapists to provide your child a customized, personalized device.

Our Approach to Treatment

The goal for treatment at Shriners Children's is to give your child a limb that works and looks right. Treatment goals can vary for each child. They may include:

  • Helping your child grow and develop
  • Helping your child feel a sense of independence
  • Encouraging self-care
  • Improving how the limb looks

Treatments vary depending on your child's condition. Options may include:

 

I get to be that person I didn’t have as a kid. I just ask myself, ‘Who does 8-year-old Zach need?’ Then I go be that person.
Zach, St. Louis

Care for the Whole Family

A limb deficiency diagnosis can be stressful for the entire family. Those stressors can include fears about your child's future and insecurity about making the right decisions. Be reassured that if your child comes to Shriners Children's, you'll have an entire care team to guide you. Your child’s care providers understand the concerns of children and parents navigating this journey.

We are dedicated to helping our patients remain positive and optimistic about their future possibilities and quality of life. Our orthopedic specialists work side-by-side with physical therapists, occupational therapists, mental health professionals and social workers to provide complete care designed to help children with limb deficiencies feel confident and empowered.

Specific treatments and services may vary by location. Please contact a specific location for more information.

Riley explains her journey with Fibular Hemimelia

Riley is a patient at Shriners Hospitals for Children — St. Louis. She has Fibular Hemimelia. Watch her story to learn more about her journey!
View Transcript

Riley:

Now I'm a patient of Shriner's hospital because when I was born, I had a club foot, which it was turned into the inside. And then my leg was shorter than the other one with that process. Well, I had a five-hour surgery when I was first born on my ankle, and then I had some surgeries when I was little that I don't really remember. But the ones that I first remembered was when I was in fourth grade, and they did the halo lengthening on my lower leg. They did that, and then after that was over with, they did an ankle surgery where they put a plate in my ankle so it would turn in, and then did the same thing with my knee because my knee was turning in. And then, in freshman year, they did another leg lengthening to my upper leg where they put the rod in, and they had the magnet. Then now I did a ankle surgery where they went in and cut my ankle bone and put screws in it so it will grow back straight.

J. Eric Gordon, MD:

Fibular Hemimelias are a relatively common congenital cause of leg length discrepancy. It primarily affects the tibia, and often it comes along with ankle deformities and sometimes some knee deformities. Sometimes they're associated with problems with ligament laxity as well. We have some surgeries that we can do to provide ankle stability. After we do that, we can proceed with the leg-lengthening. The lengthening process itself is often something that we use an external fixator for. Sometimes we can use one of the self lengthening Ellipse nails for. And usually, it works fairly well.

Riley:

Nothing really stops me from doing anything. I do horse riding. And so, when I had my halo on, I was kind of freaked out. I can't do my horse riding or anything. So as soon as I got off my crutches and I started putting weight on it, they were like, "Yeah, you can ride." I showed them pictures of me riding and everything. Nothing really stops me.

J. Eric Gordon, MD:

I have the simple part in terms of doing the surgery. I'm pretty much done after that. I tell most of them, if they can do this, they can do anything in life.


female patient hugging mom

Helping Your Child Live the Life They Want to Live

A visit to one of our master Pediatric Orthotist and Prosthetic Services specialists is about more than measurements and mechanics. It is about sharing hopes and dreams with a trained professional who understands the needs of children, providing information that allows the technicians to return to the lab and design the perfect fit. Every day, these craftspeople help improve the quality of life for our patients. Come learn more.

Next Steps

Request an Appointment

Families and caregivers seeking treatment should start by contacting us for an appointment.

Log in to the Patient Portal

Parents and guardians of existing patients can email, request records, schedule appointments and more.

Refer a Patient

Physicians and healthcare providers can request appointments, start transfers or contact us with questions.