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11 clinical tips for treating congenital limb deficiency
Margaret Quinn, DNP, CPNP
Ganga Mahat, EDD, RNBC
Treating a child with a congenital limb deficiency can be a challenge. It is imperative that the clinician care not only for the child, but the family, and cover not only physical health, but mental health and educational progress. Here are 11 tips to improve care in your practice.
Treating a child with a congenital limb deficiency can be a challenge. It is imperative that the clinician care not only for the child, but the family, and cover not only physical health, but mental health and educational progress. Here are 11 tips to improve care in your practice.
A thorough physical examination should be performed to rule out additional congenital anomalies or dysmorphology. Cardiac consultation may be warranted to assess for any structural cardiac comorbidity.
Diagnostic workup should be made to rule out a genetic syndrome that may include other organ systems or known associations.
History of pregnancy losses, congenital anomalies, and consanguinity should be assessed up to 3 generations to assess for any hereditary influences on the defect.
The management of a patient requires an early multidisciplinary approach: orthopedics, occupational and physical therapy, and physiatry to start as early as possible to encourage the child to meet all developmental milestones.
Child’s overall well-being depends on family function. Parents experience grief and loss with the birth of a child with the deformity and they need guidance and support from the healthcare providers, families, and friends. Attending a support group of parents with children with limb deficiency or other cosmetic deformities (such as cleft lip) are helpful as parents share their experiences and help each other cope raising their children.
At each visit to the healthcare provider, it is important to assess all domains of development as a child’s abilities change as they grow. A child without any cognitive impairments should attain his/her developmental milestones within the normal range or may need therapeutic modifications to meet those milestones.
- This evaluation should include activities of daily living, function with and without their prosthesis, and overall limb function.
- Detailed assessment of gross motor skills should occur as those delays are noted after infancy, such as catching or throwing a ball.
- Walking may be slightly delayed because of the upper body balance needed for gait.
- Assess the stump during growth periods and for hypersensation and touch pressure sensation, as this encourages functional activities with and without a prosthesis. As children grow, they may require prosthesis changes.
If their child is wearing a prosthesis, parents should be made aware of prosthesis-related complications, such as skin irritation or breakdown.
Assist the family with preparation of an individualized education plan (IEP) when the child enters school. Developing a plan for the use of an assistive device or any classroom accommodations should be discussed with the school nurse, administrator, and teacher to allow a sense of normalcy and reduce bullying in the school environment.
- School and daycare personnel should be educated about how to care for the prosthesis.
- There are several sports prostheses that are available, but many children adapt to sports without the use of a prosthesis.
As the child gets older, assess for scoliosis as children with congenital limb deficiencies have an increase in scoliosis incidence due to the absence of counterbalance of weight on the affected side.