Harrison's Story: Parent's Letter Project Club feet- Harrison's mom

My son, Harrison, was born with bilateral club feet and it completely caught us off guard. We had never heard of the condition and did not know what was ahead. It was heartbreaking to have to sign paperwork in the hospital that acknowledged my son was born "deformed." It is hard not to be depressed and think, "How can this horrible thinghappen to our child?\" It is even harder to remember that out of all the things that could go wrong, club feet aren't that bad because they are not life threatening and they arecorrectable. Let me say again, they are correctable. This is something you must remember and be eternally thankful for. The wonderful doctors at Children's National can correct the problem through a series of procedures.

Your child will walk, run, dance, and most likely never remember the whole ordeal. You, the parent on the other hand will feel like it took forever, and it is a long process of procedures to correct the deformity. Let me assure you that it will be harder for you than your child.

Here is what Harrison endured: Casting. As a new-born, Harrison had ten weeks in which they casted both legs from the top of the thigh all the way down to the feet, with only the toes hanging out. Each week they sawed off the casts, repositioned the feet, and re-casted. I'll be honest, the casting procedure was the hardest for me because you sit and hold down your child while they saw off the new cast and put on the new one. Your baby will scream and cry the whole time. They suggest you bring them hungry and try to pacify them with a bottle, but that didn't work for me. Harrison would cry so much he'd pass out.

Their legs look bruised and scratched under that casts and they will over-correct the feet so that they point out in a seemingly unnatural position. I'd dose Harrison with some baby Motrin for the next 24 hours after casting. But while the casting procedure is heart breaking -- afterwards your baby will act as if nothing is on their legs -- they will swing their legs, clap them together and generally be happy and content as if nothing unusual is going on. Diaper changing is a bit challenging. Get over the fact that you baby will not be able to wear the footed PJs -- and be prepared for lots of strange looks and questions when you are out in public.

I was very depressed during this time frame, so seek support where you can. I really do think this phase is the hardest, and the length of casting will vary by your child's condition. Your child may also need a heel cord operation, a minor procedure where they cut the heel cord, but Harrison did not need this operation so I cannot speak much about it. The next stage for us was boots and bars where for the first two months boots and bars were worn 23 hours a day. They are old-fashion-looking boots bolted to a bar between the two feet. A professional will fit your child and explain everything to you. Again, choose your outfits carefully. Snap up pants were the best because you don't have to remove the boots and bars for diaper changes. I found it was best not to use blankets at all, but rather just dress Harrison warmly. The metal bar and hard shoes can cause significant damage to your crib, as they like to kick them against the sides. An extra row of bumpers can help. At this stage your child won't mind at all; they learn to crawl with them on -- kick them around with ease and are content.

He began walking at 14 months old, a bit late, but he was moving around by holding onto furniture way before that. For Harrison, after the first two months of continual wearing, we were down to just wearing them at night. By two years of age he would take them off himself and it became a big battle. Be prepared for this battle. As they grow older, they are not going to want to wear them. We used tricks such as putting them on after he fell asleep, or during the relaxing bedtime story. We had him in a toddler bed that was low to the ground so he could crawl out with the boots and bars still on. Luckily we were able to discontinue around two years. At 3 years of age, Harrison had a minor corrective procedure that involved releasing the tendons in his "curly toes," four on each foot. It was an in-and-out procedure with about a week before he could begin walking again. My son was actually more than happy to go to the hospital for the operation, recovery is harder. Good pain killers and some good diversions are necessary.

We had his grandparents come and stay with us and tried to just keep him not thinking about his feet. By the age of three, he was like any other kid running, jumping -- the whole bit. No one would know about his condition. His feet are a bit flat, but he seems completely normal. We are taking him to a sports therapist as his legs and feet seem stiff which is not uncommon.

He is now 5 years old and his recovery has been so complete that Children's National doesn't need to see him for several years – and that's just for a check-up. I tried to be frank as possible telling you Harrison's story so you know what to expect. Looking back, I wish I hadn't been so upset about it and wish I was better able to see the bigger picture, which is a happy ending with a child who can walk and run like any other child.

I wish you all the best. Sincerely,

Harrison's mom, Janene

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