Luke

I thought this joke was really funny; told all my friends & had a laugh.

When I asked Luke’s father, on the way back from the delivery room, if all his “bits” were there, he replied “no, his big toe is missing”….. I laughed……. “No really” I said, “is he OK?” His big toe WAS missing; a small sign of something greater. His left Tibia was also missing.

“Will he be able to run & play football?” I was talking to Luke’s consultant, Luke was 4 days old. “Yes of course he will”. Fine, then there was no problem. Then I got to think. The next day I called the consultant back, “how exactly will he do this?” “With an artificial leg”, was his curt reply.

This was a bombshell for me. My child was going to be handicapped; would he be better off dead? It’s not fair, he’s done nothing wrong! If I shut my eyes and open them he’ll be normal. God… I can’t cope. STOP. Stop. He’s beautiful, he’s my son; he’s just going to have more to contend with. I CAN do it.

“Will his artificial leg be fully functional? Will it work with his own nerves & muscles?” I was talking to my GP. “Oh yes, yes. It’s amazing what they can do now days”. He knew nothing about prosthetics; nor did I.

When Luke was nine months old, we went to visit another family whose son had the same condition as Luke. He was a year older and more severely affected. ( Tibial hemimelia syndrome can effect both the legs & the arms, Luke is lucky, it’s just one leg, the rest is fine.) This was the first time that I saw the prosthetic leg which Luke would get. It was straight, hollow & plastic – like a dolls leg. “There must be some mistake I thought, “what of the technology – the bionic leg….”

I had made no mistake; no one manufactures functional parts for one so small. I was devastated.

Luke had his leg disarticulated through the knee at GOS, he was a year old. (Disarticulation is amputation through a joint). His femur is short, leaving ample room for a false knee. He recovered well and was soon ready to try his prosthetic leg. “I really think he could do with a knee joint ” – now I was talking to his prosthetist, Chris , at Norwich. “no one makes them, he’s too small, it would be too heavy …..” Poor Chris, I won’t be told. “But why, but what if, has any one tried….” Having no other option, Chris MADE a leg with two hinges either side of the knee area , pulled straight with elastic on the front, over a piece of wood. It was brilliant. (Thanks so much Chris)

Since then we haven’t looked back. Luke is 4 now and goes from strength to strength, jumping hopping, running – he climbs the steps for slides, jumps off the stage at play school, runs up & down slopes and does everything which a child with two biological legs would do. He has a new Knee from Century XX11 – The little wonder children’s Total Knee which is a modular system with seven bar linkage (sounds impressive doesn’t it!) – and he’s just about to receive a Flex Walk foot – thanks again Chris. He controls the bend of his knee at will & he’s a joy to watch.

When I was first introduced to STEPS, Luke and I had just come home from hospital after his birth. A friend of mine had had a son with Talipes, she gave me a STEPS newsletter. I read an article about a boy who’s fibula was missing. I found it very distressing and read no further. I didn’t join STEPS. Instead I set about finding out as much as I could about children’s prosthetics & Luke’s condition. An absolute dream has been the internet. There is a web site for parents of children with amputations (http://www.child-amputee.net) and from here you can join a list serve called I-CAN. This is worldwide e-mail list for parents of children with amputations and when a letter is sent it goes to every member on the list. Should you want to send a reply, this also goes to every member. I read the mail every day and chat a fair bit too. I feel that I know the others on the list & love to hear about their children & what they’ve been up to. Swapping information & experiences on a day to day basis is a joy. I wish that everyone could have access to this facility.

Now I want to get more involved with STEPS, meet other parents & give Luke the opportunity to meet others like him, I should hate for him to think that he is the only one.

I still wonder at the lack of functionality in small children’s prosthetic legs, and I shall still bug who ever I can about it, but Luke is the apple of my eye & his achievements so far make me swell with pride.