If Your Baby Has Congenital Limb Deficiency

Sarah was just 13 months old when she was first fitted with her first prosthesis.

For Patricia Walsh, the decision to have her daughter’s leg amputated came clearly and quickly. Sarah was born with a congenital condition, fibula hemimelia, giving her a short right leg and a foot with one big toe and two webbed toes. The choice was between keeping the leg, which would mean lots of corrective surgery, or having it taken off below the knee.

“When we weighed up the pros and cons of years of surgery, the likelihood of Sarah missing a lot of school, and the possibility of low self-esteem stemming from that, it was an easy decision,” says Patricia. “Sarah went into hospital for the amputation on a Tuesday and was home on the Thursday.” Today, 16-year-old Sarah is a world-ranked runner. She surfs, swims, rides a bike and plays basketball, and is a living, adventuring affirmation of her parents’ decision made when she was just 10 days old.

Congenital limb deficiency is the term used when children are born without all or part of a limb. “It can be very disturbing and a great shock to parents, causing extreme sadness and a profound sense of loss,” says Dr Adrienne Epps, Senior Staff Specialist in Paediatric Rehabilitation, Sydney Children’s Hospital Network (Westmead and Randwick). Epps says anxiety about what the future holds, and uncertain expectations, requires sensitive support and information to help families adjust. Yet children’s remarkable capacity to accept and adapt often surprises parents.

Irish couple Patricia and Tom were living in Engadine, Sydney, with no close family in Australia, longing for a child, when Patricia discovered she was pregnant with Sarah. The first they knew of Sarah’s difference was when she was born. “We’d been married eight years and gone through two miscarriages, so Sarah could have had 10 heads for all we cared,” says Patricia. “We were just so happy to have her, and didn’t really fuss. My friends couldn’t understand why it happened to us, but I regarded it as one of those things. Some people have brown eyes, some people have blue eyes – it was like that.”

At 13 months, Sarah was fitted with a prosthesis to encourage her to learn to walk and to develop a gait before she had her leg amputated. Specialists advised it would be easier for her to adapt. Her lower leg was amputated at 17 months. Apart from regular trips to the prosthetic clinic for a new leg fitting, Sarah has been treated the same as her younger sisters Katie, nine, and Laura, eight – with a big dose of positive attitude. At first Patricia and Tom stayed away from groups dedicated to people with differences, but they are now heavily involved with the Kids UnLimbited Support Group, which supports families with amputees, and Patricia is the contact person for this group.

Key challenges for children with limb differences are meeting other kids, going to school and coping with the stares and curiosity. Many parents say briefing school principals and teachers, and offering assistance to explain their child’s difference to classmates, rather than leaving the difference unacknowledged, helps enormously.

Read part two, Congenital Limb Deficiencies In Children.


 

This article originally appeared in the October 2012 edition of CHILD Mags as Of Life And Limbs.

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