Hetler family has ‘only positive expectations’ for daughter born with limb differences
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Center for Limb Differences
The Center for Limb Differences at Mary Free Bed specializes in caring for young patients with congenital and acquired hand, foot and limb differences. Established in 1946, the center was the nation’s first pediatric amputee clinic. Ever since, we’ve focused exclusively on the needs of infants, children and teenagers.
At The Center for Limb Differences, we provide care, offer support and recommend resources to benefit your child from birth through age 18. We also offer prenatal consultations.
Different since 1946.
Mary Free Bed’s Center for Limb Differences was founded in Grand Rapids by physicians Charles Frantz and George Aiken, world-recognized experts in the field of pediatric limb differences. They pioneered the concept of multidisciplinary treatment – combining orthopedic and prosthetic care with therapeutic and psychosocial disciplines.
The program was the first of its kind in the nation, and permanently changed the perception of children with amputations and the medical treatment they received.
Today, the Center continues to shape the future of care for children with limb differences, led by pediatric orthopedic surgeons Dr. Michael Forness and Dr. Lisa Maskill, who specialize in these diagnoses. Click on the page sections above to learn more about our services, meet our team and gain access to helpful resources.
Contact Us
616.840.8005
800.668.6001
/ Your Experience
Your Experience
Customized Treatment
Treatment plans are crafted to meet the unique needs of each patient, including young people with a broad range of congenital amputations and syndromes, acquired amputations and those undergoing frame treatment for limb lengthening or angular correction and limb salvage. We develop and coordinate programs to be utilized by local therapists and agencies in the patient’s home community which is especially important when patients come from a distance.
Taking the First Steps
An evaluation should be made as soon as possible after your child’s birth or amputation. We can discuss a treatment plan and provide information about resources and other support services available to your child and family. Our team also can provide second opinions.
What to Expect
Patients generally visit the center two to three times a year. Your child’s schedule depends on circumstances unique to him or her. We’ll assess your child at each visit on things like orthopedic condition, growth and developmental needs.
We provide medical care, therapy, orthotic and prosthetic fittings and management through Mary Free Bed’s Orthotics & Prosthetics + Bionics department. We also work with our Motion Analysis Laboratory, where experts use sophisticated technology to study the way your child walks and moves. Test results help doctors understand how to better treat your child’s condition.
Who we Serve
Young patients come to us for a wide variety of conditions, including:
Congenital limb differences (occurring at birth):
• Proximal femoral focal deficiency (PFFD)
• Severe limb length differences
• Congenital short femur
• Fibular hemimelia
• Tibial hemimelia
• Absence or hypoplasia of the radius, ulna
• Humeral deficiencies
• Amelia/Phocomelia
• Foot differences and hand differences
• Radial club hand
• Arthrogryposis
• Congenital short femur
• Caudal regression/Lumbosacral agenesis
Limb differences associated with syndromes:
• Thrombocytopenia & absent radius (TAR)
• Cornelia de Lange
• Poland
• Holt-Oram
• Vertebral anomalies, anal atresia, cardiac defects, tracheoesophageal fistula and/or esophageal atresia, renal & radial anomalies and limb defects (VATER/VACTERL)
Amputations due to:
• Cancer
• Vascular condition
• Accident
• Disease
• Post limb-salvage procedures
/ Meet the Team
Meet Your Team
The Center for Limb Differences is a founding and ongoing member of the Association of Children’s Prosthetic-Orthotic Clinics. As a patient, your child will be under the care of a comprehensive multidisciplinary team specializing in helping children with orthopedic conditions.
Team leadership is provided by physicians who specialize in orthopedics and treating children with limb differences:
- Michael Forness, D.O., a pediatric orthopedic surgeon specializing in limb differences
- Lisa Maskill, M.D., a pediatric orthopedic surgeon and upper extremity orthopedic specialist in limb differences
Depending on your child’s needs, his or her treatment team may include:
- Physical therapist
- Occupational therapist
- Recreational therapist
- Registered nurse
- Psychosocial support
- Care manager
Orthopedic Surgeon:
- Performs orthopedic assessment
- Evaluates your child’s functioning and outlines his or her care plan
- Provides medical management regarding prosthesis and orthosis, surgery, therapy, adaptive devices and assistive technology
Pediatric Nurse:
- Performs pediatric assessment, monitors development and provides health promotion and disease prevention information
- Prepares your child and your family for surgery
- Coordinates care with local resources and other specialists
Care Manager:
- Provides diagnostic assessment and facilitates counseling to help your child and family with adjustment, problem solving and coping skills
- Coordinates peer support
- Coordinates local educational, vocational, recreational and financial resources
Physical Therapist:
Your child’s physical therapist coordinates your child’s wheelchair seating and adaptive needs. He or she also will coordinate physical therapy services in your community, providing resources as needed. Your child’s PT also assesses lower limb activities and provides input and/or training in support of:
- Overall gross motor development
- Lower extremity prosthesis use/care/fit
- Walking/balance
- Strength/flexibility/coordination
- Wheelchair mobility
- Functional daily activities
Occupational Therapist:
Your child’s occupational therapist coordinates occupational therapy services in the local community and provides resources as needed. He or she also will recommend and assess the use of adaptive equipment and splints. Your child’s OT also assesses activities of daily living and provides input and/or training regarding:
- Upper extremity function, strength and coordination
- Overall fine motor development
- Strength, flexibility and coordination of upper limb as it impacts activities of daily living
- Upper extremity prosthesis use, care and fit
- Dressing and self-care
- Feeding
- School
- Homemaking
Certified Prosthetist:
- Evaluates your child for the prescribed prosthesis (body part replacement-such as a limb)
- Designs and fabricates the appropriate prosthesis
- Manages your child’s treatment by fitting and adjusting the prosthesis for comfort
Certified Orthotist:
- Evaluates your child for the prescribed orthosis (assistive device for the body-such as an insole)
- Designs and fabricates the appropriate orthosis
- Manages your child’s treatment by fitting and adjusting the orthosis for comfort
Registered Dietitian:
- Evaluates your child’s nutritional needs
- Provides individualized medical nutrition therapy and education for your child and your family
Additional Team Members
A pediatrician and psychologist may be part of your child’s treatment team on a referral basis.
Our team’s goal is to maximize your child’s function and become as independent as possible in all areas of development. We assist with integration into school, recreational pursuits and transitioning into adulthood.
/ FAQs
Resources
CLD Handbooks
We’ve developed a series of handbooks as part of our commitment to education. Titles available for purchase include:
- Children with Limb Differences (birth to 5 years)
• Children with Limb Differences (6 to 12 years)
• Adolescents with Limb Differences
• Children with Limb Differences: A Handbook for Teachers
• Children with Hand Differences: A Guide for Families
• Guia Para Familias de Ninos con Extremidades con Diferencias
• Your Personal Best (This is geared to young amputees for use under the guidance of physical therapists. The fun format offers several levels of exercises and guides the child through the healing process.)
Complete this Center for Limb Differences order form and fax or mail to the address listed on the form.
Helpful Handouts
Below are handouts that provide positive strategies for children and teens who may cope with teasing or self-esteem challenges. Click on a title for a downloadable link.
Teasing Happens: How to Make Friends
Teasing Happens: What To Do
Teasing Happens: Tips For Teachers
Teasing Happens: Tips For Parents
Teasing: Books For Children
Tips for Encouraging Self Esteem in Teens With Disabilities
Resources for Parents, Peers and More
American Childhood Cancer Organization
Amputee Coalition of America
Amputee Coalition of America – Support Groups
Association of Children’s Prosthetic-Orthotic Clinics
Family Resource Center on Disabilities
Federation for Children with Special Needs
Recreational and Camping Information
Disabled Sports USA
National Sports Center for the Disabled
Wilderness Inquiry
Camps:
American Camp Association
Children’s Oncology Camping Association International
Easter Seals
Still have questions? Feel free to contact us.
