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Adopting a Child with Osteogenesis Imperfecta
Congenital Talipes Equinovarus (CTEV) or Clubfoot is a congenital abnormality of the feet, from birth.. It can affect one foot or both feet. The degree of abnormality can vary widely from a mild positional deformity to a rigid foot fixed in anunusual position, unfit for walking.
While CTEV can be associated with other syndromes such as arthrogryposis and spina bifida, the majority of CTEV is idiopathic, meaning we aren't aure why it occurred. Genetics, environmental factors (such as tobacco exposure) and in utero positioning (like breech position) are all possible factors and males are twice as likely to be affected.1
Historically there has been some debate how this can be treated. There are surgical and nonsurgical (or combination) techniques that are available and much depends on age of the child at the time of treatment as well as the severity of the deformity.
The technique in favor these days is the Ponseti technique, which has 2 phases - treatment phase and maintenance phase. During the treatment phase, gentle manipulation and casting is performed on a weekly basis for 5-6 casts. This is not painful. At the time of the final cast, the majority of the children will require an Achilles tendon release. This procedure is done under local anesthesia, either in the office or in the operating room. The surgeon will make a small puncture at the ankle and release the tendon. This procedure does not require an overnight stay in the hospital. In the maintenance phase, the child wears a brace, which consists of shoes mounted to a bar, to maintain the foot in the correct position. The brace is worn for 23 hours a day for the first 3 months then worn only while sleeping for 3-4 years. Recent studies have demonstrated a high risk for recurrence if the brace is not worn according to these guidelines. In one study, researchers reported no recurrences among patients compliant with the bracing regimen compared with 57% recurrence among non-compliant patients5
If the child is older at the time of presentation, or if there is a recurrence of the deformity, treatment begins with casting then a more extensive surgical procedure is performed, such as an Achilles tendon lengthening and Tibialis anterior tendon transfer. This may be done as an outpatient procedure or may require a 1-night stay in the hospital.
After treatment, the affected foot and calf may be smalled than the non-affected side and there may be some ankle stiffness. Parents are often asked to help with range of motion exercises to treat the stiffness. Education beyond a high school level in the parents as well as parental compliance with follow-up was associated with better outcomes and decreased relapse2
Long term outcomes are very good. There can sometimes be slight limitations in the motion of the ankle joint, but 90% of patients are satisfied with the outcome.3 One study at 16 years post-correction showed similar quality of life for patients after clubfoot as compared to healthy age-matched athletes.4
This article was generously shared by Dr. Judith Eckerle of The Adoption Medicine Clinic, University of Minnesota. Child referrals are becoming increasingly complex, and adoption medicine professionals are identifying many more children with special needs from all countries that participate in intercountry adoption, as well as from the United States. To help families prepare for these changes, Dr. Eckerle and other medical specialists are writing a book: Health Topics For Preadoptive Families.
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