Late Diagnosis of DDH {Emma’s Story}

This week we are really grateful to Emma for sharing a guest post about her daughter’s experience with a late diagnosis of DDH and why a late diagnosis is not acceptable. We were lucky to have a very vigilant doctor for Penny’s newborn infant physical examination but I am all too aware of the added complexities a late diagnosis can bring and the importance of awareness and training around the signs and symptoms of DDH.

It has been 71/2 years since we had the late diagnosis of Erin’s hip dysplasia but the legacy remains.

Next week is sports day and Erin will be doing the sprint race, she is certainly not the fastest runner and will probably ache a little afterwards, but she will give it her all. Erin talks about hip dysplasia quite a bit, she is very aware and understands the operations she has had, she can hardly ignore it happened when she has a scar snaking across her bikini line. In this post, I will outline how we got the late diagnosis and why more needs to be done to stop late diagnosis.

But first let’s go back a step. Erin was 19 months when she was diagnosed after many many trips to the GP. Finally, a locum GP made a referral to physio, to a paediatrician and to orthotics. At this point Erin was limping and had only just started walking. The physio appointment came first but they looked at the wrong things and only at the very end of the assessment spotted her leg length discrepancy, we were sent on our way without hip dysplasia being mentioned.

Next came the orthotics appointment and he was concerned enough to not want to do anything to Erin. He looked at her and said something is not right and giving her built up shoes to balance out the leg length discrepancy is not the right approach, until she has been diagnosed with the cause of the issue. Looking back I think this man knew, he was very insistent that Erin gets seen quickly and he chased up her appointment. Suddenly Erin’s pead appointment was moved to the following day – I have never come across that man again but I am sure he was responsible for the final diagnosis.

I went to the pead appointment on my own with Erin and as we walked to the consultation room the consultant watched Erin tenderly walk holding my hand. As soon as I sat down he said I am pretty sure that Erin has DDH. He said we would go down for an x-ray immediately to confirm the diagnosis and that he would ring me later, personally with the result. He didn’t even examine Erin saying that she is going to be manhandled a lot over the coming weeks and that he didn’t need to add to that.

As expected he rang me within a few hours explaining that Erin had DDH and he had already spoken to the orthopaedic consultant who would be in touch asap.  Within two weeks Erin was in a theatre and at the beginning of 18 weeks in spica.

Erin’s journey did not run smooth because at the end of the 18 weeks it was clear that her treatment had not been enough. Erin still needed a Salters Osteotomy and a further 6 weeks in spica.

Why a Late Diagnosis is Not Good Enough

A late diagnosis means that we didn’t have the opportunity to see if a harness would work for Erin. 98% of children diagnosed at birth or shortly after, are fixed without surgery and go on to make a full recovery. Instead, Erin didn’t get that opportunity, we were always destined to go under the surgeon’s knife.

Many professionals that we came across did not know about DDH. The health visitor was useless and didn’t understand how a spica cast had impacted on her development.

Erin didn’t walk far after spica, it took a long time to build up those muscles and this had a huge developmental impact. She only learnt to ride her bike last month at age 9.

{water fun}

Where We Are Now

Erin is amazing but we still have yearly xrays to monitor her hips which are still not symmetrical. Her prognosis is still unclear and we are told that she may need more surgery at some point. Erin has also been diagnosed with hypermobility syndrome and this affects her joints as they are all rather loose. She frequently feels joints sublaxing and moving and she has some internal issues with it all too.

I have written extensively about ddh especially the signs and symptoms  to look out for as we really need more education to stop such late diagnosis. I have also spoken to midwives and health visitors at Bournemouth University as part of their continuous training. I am really proud that I made many cry when I told them what we have been through and I hope that they went away determined to be more aware of hip dysplasia.

DDH may not be life-limiting but it can be life changing and we need more people to share their stories and raise awareness. My husband, brother and I ran the Cheltenham half marathon to raise money for a charity that supports those with DDH. This was a huge personal challenge but it seemed only right that I pushed myself with a running challenge when walking had proven so difficult for my two year old!

A huge thank you to Emma for sharing her story and best of luck to Erin for the future!

Do you have a DDH story to share? If so contact me here to discuss submitting a guest post 🙂