Our Story

Today is Monday 5th April - 10 days since our son was diagnosed with DDH (Developmental Dysplasia of the Hip). Edward is 2 years 2 months and this is a late diagnosis - especially so given the amount of specialists he has seen.

Edward was late crawling, late cruising and very late walking. When he started to crawl he would favour one leg and drag the other and when he started to cruise around furniture one leg looked slightly longer than the other. Throughout this period our GP was monitoring his progress and did not feel that there was any reason to be concerned.

However, in November 2009, when Edward was 21 months the GP did decide it was time to refer him to a Paediatrician. The GP believed his feet were slightly out-turned and, given that he had one crease at the top of his right leg, which wasn't visible on his left leg (often an indicator of DDH), she felt it was time for a specialist to have a look at him.

In December Edward saw the Paediatrician. I voiced my concerns about his left leg looking longer than his right, the crease at the back of right leg as well as his late, and very unsteady, walking. She looked at his legs and didn't feel that there was any discrepancy (although she didn't measure them) and she moved his legs and felt confident that both hips were fine. She did think that he was leaning over on the sides of his feet, so referred Edward for a Physio Assessment.

Over Christmas Edward's walking was improving but, as he got more confident, it became very noticeable that he had a limp. So much so, that on three separate occasions I was asked if he'd hurt his leg or why he was limping. At this point I still hadn't received an appointment for the Physio Assessment, so I made an appointment to see a different GP at our surgery. He took my concerns very seriously but was a little uncomfortable that I was seeing him rather than the doctor I'd been seeing regularly for over a year. For the first time, Edward's legs were measured and there was a slight discrepancy. Within 24 hours the Physio department had called and we had an appointment for the following week.

The appointment with the Physio lasted about 45-minutes and she was very thorough. She confirmed that Edward's left leg was 1.5 cm longer than the right leg and it was also bigger in general. She also diagnosed hyper-mobility. What she ruled out completely was a problem with either of Edward's hips. I explained that I would really like him to be x-rayed, just to ensure that his hips were fine. At this point she placed both of my index fingers on his hip joints and explained that his hips were in perfect alignment and an x-ray wouldn't tell me any different. (Now that I have an x-ray proving otherwise I am fighting the urge to confront her with it).

Having seen the Physio I started to believe that Edward was fine and I was being paranoid. After all I had a diagnosis. He did have a longer left leg - but some children do - and he was hypermobile which accounted for the late walking.

Our follow up appointment with the Paediatrician was in mid-March and we just carried on as normal until that time. That said, my old worries were starting to resurface. So, on our next visit to the Paediatrician I decided to take my mum along for a bit of moral support. I wanted to insist on an x-ray. Edward was not only limping but the limp seemed to orginate from the hip and, as my mum said, he walked like an older person in need of hip replacement surgery.

On 18th March we walked into the Paediatrician's office to be confronted with a completely different doctor to the one I had seen in December. I asked if she had seen the Physio's report and she said 'no', so I was immediately feeling like this appointment was going to be a waste of time. However, from that moment on, she was absolutely brilliant. She listened and she studied Edward closely as he moved around the room.

It was a long appointment but at the end of it she promised that she would phone me when she'd had an opportunity to talk to an Orthopaedic Consultant at the hospital....and, you know what, she did! Finally someone had listened! Finally, we were making progress.

She confirmed that a Paediatric Orthopaedic Surgeon would like to see Edward and would also like to x-ray him (yes, yes yes - finally). The only downside was that it would take another month or so before we saw him. However, as I put the phone down I recalled that Edward was covered on my medical insurance at work. So, a few phone calls later and we had an appointment with the consultant for that Friday.

Since then things have been moving really quickly. The consultant confirmed that the whole of the left side of Edward's body is larger (excluding his face) but that this is coincidental and not linked to DDH in his right leg. The x-ray clearly showed that Edward's right hip is dislocated and probably has been since birth.

For the time being at least I am trying to put my anger at this late diagnosis to one side and concentrate on what needs to be done. Edward will have surgery on 28th April and then spend 6 weeks (pretty much immobile) in a cast which will start at his chest and end at his ankle (right leg) and thigh (left leg). His cast will be set so he is neither sitting or lying flat.

Crease on back of right leg, with uneven knee creases

Poor Edward - can you imagine - and all this in the knowledge that it could possibly have been avoided had it been picked up at birth