Ashley Carter’s Perthes Journey

My son Ashley recently celebrated becoming a teenager. It is now more than five years since he was diagnosed with Perthes disease.

As a mother I knew something was wrong with my child but it took countless visits to the local surgery (and a lot of tenacity on my part !) before they ruled out the usual growing pains and other common complaints and capitulated to my request for a second opinion.
The day we attended the Consultant’s clinic, he saw within 10 seconds of Ashley walking into his office, that he had Perthes Disease. We were told that something had to be done straight away. I have since found out that Perthes is something many Doctors may never encounter during their whole career in medicine. It is relatively rare and the signs don’t always ring alarm bells for Doctors.

Ash had been experiencing intermittent discomfort over a few months and his walking had become more and more painful. We were informed that it was too late for any intervention other than surgery and this was quite a shock at the time. All of a sudden, he’d been diagnosed and as a single parent I felt daunted by the inital thought of the treatment he’d have to undergo. The fact there was no choice in the matter didn’t make it any easier.

Our consultant, Timothy Turnbull (who I’m sure many of you will have met/heard of during your own Perthes journeys), is a renowned old-school Peadiatric surgeon, highly regarded in his profession and a source of great information and advice. Ashley initially found his manner slightly daunting at the age of 7 or 8 but they developed a bond over the years and he very much respects him now !

After a few xrays, we were admitted to The Royal Alexandra Children’s Hospital in Brighton (The Alex) just 2 short weeks after Ashley’s diagnosis. His operation was scheduled following seven days leg traction and the incredible team of peadiatrician’s worked together to make Ashley’s experience a positive one. Mr T performed a right femural osteotomy and Ashley subsequently spent 2-3 days on the intensive care ward with a spinal epidural to control his pain. He came up from theatre after his operation with a full body plastercast on and it took some time for him to aclymatise to being flat on his back the whole time.

Later, Ashley transferred onto the ward where he made himself very much at home. Once Ashley’s epidural was removed, his pain was kept under control until the wound began to heal. Then it was a matter of just hanging around for 12 weeks with the occasional xray to monitor progress! For the first little while, Ashley attended the hospital’s school room in his bed everyday and the teachers showed fabulous ingenuity at devising different workstations for a different angle of learning ! Sadly the rest of our stay at the Alex coincided with the school holidays so their service was not available to us for the remainder of our stay.

Ashley spent a lot of time reading and watching television as there is very little you can do when you’re unable to bend or turn. EVERYTHING is done in bed – washing, eating (which brought with it a lot of problems) and going to the toilet. We were as creative as possible ; Ashley still had a traction frame on his bed, from which we suspended his cards and drawings, and even rigged up a basket ball hoop with a chute which delivered the ball back to him to alleviate boredom ! The kindness of many made our long stay easier than it could have been. The Perthes Association were on the end of the phone for help or advice and they posted Ashley cards and gifts during his stay so he didn’t feel so alone. I also wrote to his favourite celebrities who were very generous in sending him signed photos and cards to cheer him during his stay.

I was given a room in the Ronald Macdonald Hospital Housing and spent the whole twelve weeks living in the hospital just two floors above Ashley. He had a phone by his bed and could call my room at any time of night or day. As there was little the nurses could do for him, I was able to run downstairs to help with anything he needed, allowing them to deal with other children.

The intention had been that after Ash’s operation, we’d take him home but this was an impossibility for me on my own. I couldn’t carry him in his cast as he was too heavy and we have stairs which would have meant him sleeping on the dining room table ! This was the reason we stayed and, for those of you familiar only with the not-so-great reputation of Macdonald’s – I urge you to google the RMHC website and think again. They were amazing – providing me with a home from home so I could be near my child 24-7. It cost nothing and they have been one of our chosen charities ever since…. the other being The Perthes Association of course !

Ashley was discharged from hospital after three months in a wheelchair, later progressing to crutches, with the weekly support from the hospital’s physiotherapists. They provided a heel wedge for one of his shoes to encourage his hips to grow level. He returned to school part-time at first, slowly reintegrating into school life (all except from PE !) Mr T advised Ash to be careful whilst the metal plate was in place as the bone of the femur had to be allowed sufficient time to full re-grow.

Ashley was not a keen footballer but had loved to run and play. He understood how important it was to listen to his body during this time in order for the best outcome for him and I often reminded him that it wouldn’t be forever, no matter how it felt. I was so proud of the sensible way he approached the challenge and took every opportunity to be an ambassador in raising the awareness of the existence of Perthes disease, even giving a talk at his school.

One year on (almost to the day) he was readmitted to The Alex and underwent the comparitively minor operation to remove the metal plate. However, This was probably the harder of the two operations for Ash. Although the first was doubtless the most traumatic physically, Ashley knew exactly what he was walking back into the second time around – and was one year older and wiser too ! This time we were discharged after only one overnight stay, he coped remarkably and was relieved to be home!
Again, he had crutches but this was fairly short-lived and he was pleased a few months later when Mr T allowed him to tentatively take part in some sport again.

Since then, Ashley has not looked back ! He is now in year 8 at secondary school and taking part in PE lessons (except for rugby). He is a good student and an exceedingly determined young man. He does not like hearing children claiming to be ‘bored’ and I recently heard him berrating a friend for it, explaining calmly that he couldn’t possibly have any idea of the meaning of the word unless he’d been in a bodycast in hospital for three months !

I truly believe the challenges Ashley faced (as well as an eye operation at the age of six) have shaped the person he is to become. He has a balanced outlook on life in general, as well as an appreciaton for it that I would say is fairly uncommon in most children his age.
He plays keyboard, cornet, trumpet and accordian, is a voracious reader and an attentive student. He joined a fencing club a few years ago which has helped strenghten the affected leg muscles and still fences weekly, enjoying competing against the adults! In addition, he enjoys target archery, a sport which he started whilst in a wheelchair – proof that there are always options available!

Apologies for my lengthy recount, I’ve tried to provide a detailed explanation of Ashley’s Perthes Journey. Every parent will know that each child’s experience will differ, but there are always many other common factors. We received fabulous ongoing support from our GP, consultant, nurses, radiographers and countless other medical professionals on the way. Ashley was even given a year of weekly post-treatment play therapy to combat any negative effects and was finally signed off completely by Mr T in 2010.

Family life finally resumed normality, or as normal as it can be in our household and Ashley mentions his Perthes every now and then. It’s still very much a part of him and dicussed as a matter of course, as a memory. His experience seemed to me to be an unfair challenge for a child of his age at the time and it felt as though it was endless. But, children are resilient beings and often cope better than we do in these situations !

I was talking to Lisa recently and she urged me to write a positive piece contribution for the newsletter which would be encouraging for other parents currently going through what we did. Ashley is now healthy and happy – thanks to the heel wedge he no longer has any perceivable limp at all.

In fact, to look at Ashley, you can’t tell he bears a scar from his osteotomy and that is exactly the point; Ashley’s only scar is physical. He overcame his Perthes and it’s now in his past. It’s a long journey but there can be a happy ending.

Helene Carter