24 Nov Congenital Limb Deficiencies In Children
We focus on on what children with limb differences can do, rather than what they can’t.
Kathy Hobbs wrote a letter explaining her son Aiden’s congenital condition (he was born with webbed fingers and toes, though with surgery he now has three inflexible fingers and a thumb on each hand) and how many operations he’d had, which Aiden’s school copied and sent home to parents. She says it was a great icebreaker. “Parents read the letter with their children and explained Aiden’s differences to them so that the children did not feel the need to ask Aiden. I find it quite rude of children to always ask about his differences. At the end of the letter we added what Aiden’s interests were and encouraged children to come and say hi to him. That made such a difference.”
Margie and David Brownlow were similarly concerned about preparing their six-year-old daughter, Tilda, for explaining her difference to schoolmates. Tilda was born with one shorter leg, which has a small foot and three toes. After deliberating at length, they had the foot amputated when Tilda was 20 months old. She has a prosthetic leg that attaches below her knee. “We thought about how we would help with the way other kids reacted to her, and decided it might be best for Tilda to stand up and tell her story to the class, but she ended up beating us to it and did it herself before we mentioned it,” says David.
“The other kids were all very intrigued because she’d take her leg off on hot days. One day she just took herself up to the front of the classroom and told them what it was all about.”
Before she had surgery to remove part of her leg, Dorothy Maciaga, now 37, remembers asking her teacher to let her class know she would be going away for a while and returning with part of herself missing. She was 15 years old and had not long arrived with her family from Poland when she had part of her congenitally different leg amputated in Melbourne. In Poland, classmates had bullied her for her difference but in Australia this did not happen. “There was a different mentality in Poland. You didn’t see a lot of people with disabilities out and about.” In Australia, she was too busy learning to speak English and adapting to her adopted homeland to be distracted by her difference. Her parents, meanwhile, had always insisted she was normal, to the point of almost denying her difference. Years later it caught up with her.
“It was a downfall from a psychological point of view, because my parents brought me up to believe there was nothing wrong with me, and it took me a while to mentally adjust as I got older.” Until about five years ago, Dorothy couldn’t acknowledge she was like other amputees, but when she did, it helped her accept herself. She urges parents of children with limb differences to acknowledge their disability, but “treat the child like a child, not a kid with a disability”. Now Dorothy works with Limbs 4 Life in Melbourne, which provides information and support to amputees.
The Brownlows talked about difference with Tilda from the start. David recalls the day he sat with his daughter, explaining how everyone was different. He was different because he was bald, and Tilda’s brother Barney was different because he had big blue eyes. Tilda volunteered that she was different because of her thick blonde hair. “At school one kid sidled up to her and asked where she got her leg from. Without hesitating, Tilda replied, ‘I got it from Rudi’ (the man who designs her prostheses). It was such a beautiful, simple inquisition. The child was satisfied with that and walked away.” The Brownlows have faced many moments of anxiety, such as the time children surrounded Tilda on the trampoline, chanting, “take it (her leg) off”. David calls this Tilda’s Lord Of The Flies moment. Yet most days life goes on normally, and for the most part her parents treat her the same as her siblings.
“There are days when it doesn’t even enter my mind,” says Margie. “The only time I think about it is when we have to get a new leg.”
Helen Dundas advises parents not to hold their children back when they see others with limb differences and want to ask questions. Her son Toby, five, was born with two fingers on each hand and two toes on each foot. “The more they pull their kids away, the worse Toby is going to feel,” says Helen.
“When he was little, Dave and I spent a lot of time thinking about what he couldn’t do and he just keeps showing us what he can do. My advice (to parents of children like Toby) is to put your energy into loving them, and they will surprise you and teach you how to be.”
Words by Genevieve Barlow