Many parents of a child with Charcot-Marie-Tooth disease become more familiar than they would like with their local hospital. Our most recent visit was to the x-ray department. Samson had been referred for a hip x-ray by the specialist CMT clinic he attends at Great Ormand Street Children’s Hospital in London. Due to our family history, and the physiotherapist’s observations during his most recent physical assessment, they wanted to check his hip position. Hip dysplasia is sometimes seen in people with CMT, affecting 6-8% of CMT patients*. My sister, Samson’s aunt, suffers with double hip dysplasia and has recently had major surgery to change the position of her hip socket to better accommodate the ball joint.

When I told Samson about the appointment, I explained it was just for a special photograph to be taken. Samson asked if it would hurt and if he’d have to do any exercises. I reassured him and we talked about one of Samson’s favorite children’s TV shows hosted by two medical doctors, Operation Ouch!, he remembered seeing a photograph of an x-ray on the show. We looked at some hip x-ray photographs on the internet and named some of the bones.

The hospital was able to fit us in for a 9am appointment, so as not to disrupt Samson’s school day too much. Samson arrived at the hospital with his puppet ‘Dog Dog’ in tow and bursting with stories to tell the radiographer, she immediately put him at ease by listening intently to everything he knew about x-rays. She let him carefully maneuver the machine and press some of the buttons before asking him to hop on the bed and lie very still with his legs straight for the x-ray to be taken. Samson was able to keep his own shorts on as they did not contain any metal parts. The radiographer set everything up properly and once Samson was settled into position, she took me to stand behind a protective screen with her. The screen was transparent, Samson could see me at all times, and I think that helped to keep him at ease. The first x-ray was taken, and the radiographer moved Samson into a froggy-leg position for a second x-ray. Once the radiographer checked both images, Samson helped move the machine back up and was given his choice of stickers! Samson was very interested to look at the x-ray images on the computer screen and see inside his own body. He asked if we could have a copy of the x-ray and the radiographer was happy to allow us to take a photograph of the screen.

The whole appointment took around 30 minutes, Samson left the hospital smiling and wore his stickers with pride when I dropped him off at school. At the time of writing, we’re still waiting to hear from his pediatrician with the results, I’m very much hoping that no news is good news!