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Congenital Limb Deficiencies and Amputations

Unparalleled care for childhood limb deficiencies

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Congenital Limb Deficiencies and Amputations

The term "limb deficiency" is broad, covering everything from congenital limb irregularities and dwarfism to limb issues that result from a serious injury. Whether a child presents with a limb deficiency at birth or experiences it from an injury or amputation, limb asymmetry can be a physical and emotional hardship for a developing child. Shriners Hospitals for Children is devoted to helping families receive unparalleled specialty care that addresses the unique physical and psychological needs of every child.

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 lower limb deficiencies). Some babies are born with both. Limb deficiency occurs when part or all of the limb does not completely form during pregnancy, resulting in asymmetry of the limbs. This can vary greatly from one child to another, and may also be after the result of a major injury.

Amputation, whether due to trauma or recommended as part of a treatment program, is followed by an especially trying time for children and their families, both during the physical recovery process and the psychological adjustment period.

At Shriners Hospitals for Children, our collaborative care teams are dedicated to patient and family education, providing a warm and supportive environment, and sharing resources about camps, programs and activities designed especially for limb-deficient children. Our goal is to improve the function, mobility and independence of each child.

What causes congenital limb deficiencies and amputations?

There isn't one known cause of congenital limb deficiencies. There is research linking certain types of limb reductions to other birth defects, such as heart defects. Other research suggests that smoking while pregnant could potentially increase the risk for limb deficiencies. The truth is that science is still working toward understanding the causes.

Amputations, on the other hand, are typically the result of a serious injury. In some cases, amputation is a treatment for a limb deficiency. In rare cases, a cancerous tumor or serious infection may necessitate amputation.

Types of congenital limb deficiencies and amputations

Limb deficiencies are generally broken down into the following two categories:

  • Congenital deficiencies: This refers to limb discrepancies that are present at birth. The discrepancy is different for every child and may manifest as one limb being shorter than the other or one limb being absent or underdeveloped. Sometimes, the discrepancy is an indicator of other potential birth defects.
  • Acquired deficiencies: This is exactly what the name implies. Acquired limb discrepancies are not present at birth. Instead, they're acquired after a major injury or health crisis. If the growth plate is severely damaged, the limb length discrepancy will likely become more pronounced as the child continues growing. After some forms of physical trauma, amputation may prove to be the best path forward for the overall health of the child.

Treatment and management approaches

Treating pediatric limb deficiencies is a highly specialized area of health care. At Shriners Hospitals for Children, we believe in collaborating with families to build individualized treatment plans tailored to each child's individual needs. We take into consideration the child’s age, the severity of the discrepancy or location of amputation and the child’s ability to participate in the treatment plan.

One thing that remains constant is our dedication to helping our patients remain positive and optimistic about their future accomplishments and quality of life. Our orthopaedic specialists work side-by-side with physical therapists, occupational therapists and social workers  to provide wraparound care that's designed to help children with limb deficiencies feel confident and empowered.

Common treatments and services:

  • Epiphysiodesis: This simple surgical intervention safely and deliberately interrupts the growth of one leg so that the shorter leg can catch up and eventually reach equality with the other.
  • Femoral shortening: In this procedure, a part of the femur is resected, or surgically removed, and internal fixation is used to stabilize the femoral segments. It is used when there is enough growth remaining to allow epiphysiodesis to be effective.
  • Limb lengthening and reconstruction: Leg lengthening can be performed by an external fixation device, which are rings or rods, that surgically connect to the bone using pins or wires that go from outside the leg, through the skin and into the bone. Options also exist in which an internal lengthening rod will be surgically implanted into the femur bone.
  • Physical therapy: This provides children with the opportunity to learn how to elevate their abilities and move toward mobility that's as independent and comfortable as possible.
  • Occupational therapy: Therapists work alongside children with limb deficiencies to help strengthen their fine motor skills, improve confidence, and foster independent functioning.
  • Pediatric Orthotic and Prosthetic Services (POPS): The Shriners Hospitals for Children state-of-the-art Pediatric Orthotic and Prosthetic Services (POPS), LLC departments champion a multidisciplinary team approach to treating children with amputations or limb deficiencies. Patients are given comprehensive evaluations by a physician, a prosthetist/orthotist, an occupational or physical therapist and a social worker. The POPS teams work with the patient and family to build a treatment plan as a team, consulting with orthopaedic surgeons regarding surgical options as needed.
  • Motion analysis center: Clinical motion analysis is used to help understand acquired or congenital disorders, or complex neuromuscular conditions that affect gait.

Conditions, treatments and services provided may vary by location. Please consult with the Shriners Hospitals for Children location nearest you. See zip code search feature to the right.

Request an Appointment

Most major insurance providers are accepted; however, insurance coverage is not required for care. Any child under 18 with a medical condition or medical need that is within the health care system’s scope of services, is eligible for care. Shriners Hospitals for Children offers financial assistance to those in need.
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Find a Location Near You

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22 Locations Across North America

Location Specialties
  • Burn Care
  • Craniofacial and Cleft Lip/Palate
  • Neuromuscular
  • Orthopaedics
  • Orthotics and Prosthetics
  • Pediatric Surgery
  • Spinal Cord Injury
  • Sports Injury and Fractures
  • Therapy and Rehabilitation

Notice: Treatments and services vary by location. Contact nearest hospital for specific details.

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