Patient Stories

Hope

I was born in 1990 in the North-East of England and my bilateral hip dysplasia was recognised a couple of days after I was born. My parents were initially told to put me in large nappies and I was later put into a spica plaster.
At the same time I was struggling with immunity problems and was fed through an Ng tube. I spent most of the first few months of my life in the Freeman Hospital in spica casts or in traction.
The traction meant that most of my families early photos are of me with my legs bandaged up in the air with weights to try and corrext the position of my hips.
Xrays showed that my hip sockets were very shallow resulting in my hips easily slipping out of the sockets and a rotation on my femurs.
I had multiple femoral osteotomies and pelvic osteotomies to try and create less shallow sockets and correct the joint.
This would always seem to work and although I missed a great deal of school I still had a normal childhood making friends and doing pretty much whatever I wanted to do as long as my trusty wheelie walker frame could come with me.

This included sledging with my grandparents whilst in a hip spica.
I have fond memories of my splints which to make them more tolerable were nicknamed Lucy and Larry because of the sheepskin lining on the supports. I also named my zimmer frames Henry as they used to go everywhere with me and it made them more fun.

I continued to have surgeries at freeman everytime I had a growth spurt as my hips would begin to dislocate and wear each time I grew.
At age 5 my consultant orthopaedic surgeon retired and due the severity of my condition I was referred to Great Ormond Street Hospital in London where I continued to have regular surgery on my hips until age 13.

Whilst having surgery I was always up beat even when it was really painful or I was really poorly due to infection or surgical complications.
I have great memories of my spica casts which were always in a variety of colours including paint splodge.
I even had fun adapting to life when I had my spicas on for example to get round my parents house I used to lie on my belly on a skateboard and pull my self around I even made a cake lying on the floor. I also scared the life out of my physio and parents when I learned how to slide head first down the stairs in my cast.

I also learned to skateboard, tried snowboarding, rock climbed, scuba diving, snorkeling, rollerskating and most sports.
All of which I did either between surgeries and some even when I was recovering.

It wasn’t always plain sailing though it was hard when you know your friends ar school are able to run around and play contact sports and your else where doing exercises with your physio. I also had a lot of help with school as I missed a lot of classes due to surgery and recovery time at home. Although I never minded skipping maths to do hydro therapy.
I was also bullied due to my walking and my walking frames. I also used a special adapted chair at school to support my hips and bsck and make sitting more comfortable which did draw attention to my condition. However being the determined person I am although it hurt I kept going.

At 13 after having osteotomies and pelvic reconstructions and illiac crest grafts to my hip sockets my hips improved dramatically. I had much less pain my walking got much better (phew) and on xrays my hips actually looked like normal hips.

It was a great relief to both myself and my family to be told that from that point I wouldn’t need surgery for quite a while. At that point the consultant felt I wouldn’t require surgery till my late 20s or 30s.

I had a number of years where I was able to go to school and lead a normal life taking pain killers occasionally and having regular check ups with my physio.

At 17 I was discharged from the care of GOSH and sent to an young adult consultant at Freeman again.
Towards the end of 2007 I began to get increasing pain in my right hip.
Xrays showed I had osteoarthritis developing in my right hip and the space between my femoral head and socket was decreasing.
I was given a more intensive exercise routine to try and build up the strength in my hip to help with the arthritis and a different course of pain relief.
That did help my hip in the short term and I continued my final year of school. I attended my leavers prom in june of 2008 and had been having more discomfort at that time. After the prom I rested and the pain got worse to the point I received crutches and had to spend time using my wheelchair. I felt down as I only used my wheelchair for long distances such as going on holiday to theme parks in America as I can’t walk very far without getting muscle fatigue.

I spent time in hospital on morphine, having hydrotherapy for 6 months and having traction to try and relieve the pressure on my joint.

This did not improve my hip, and after discussing my case with a consultant specialised in DDH patients we agreed that surgery to replace the joint was the best option.

At this point I was 18 years old and no one wanted to give me a totsl hip replacement as they felt I was too young or my hip was too complicated to operate on.
I was referred to the Royal Orthopaedic Hospital in Birmingham where I met with a specialist in young people who require hip replacements.
We discussed my case and he felt the best option was a hip resurfacing. As this would last 25 years and would preserve bone in my femur in case of a future revison with a total hip prosthesis.
Where the stems go much deeper into the femur rather than just replacing the ball and socket.

Due to the external rotation on my femur I also required a femoral osteotomy as the surgeon could not get the joint to stay in place with the rotation.

I had my surgery in November 2008. Due to a prolonged surgery and blood loss I spent a night in HDU with a dodgy epidural my left leg was lovely and numb and my right operative leg was in agony more tissue than joint.
My first words on moving my hip for the first time was its so smooth the joint moved so well like a well oiled joint. I was so so happy.

Despite the complications I had with blood loss I still got up out of bed on the first post operative day and walked on my hip. After two weeks I returned home and continued my recovery.
I received hydrotherapy at Freeman and my hip gradually got stronger. I could walk and run better and was able to drive and get about on my own.

Before my surgery I had applied to go to university to become an operating department practitioner. This is a nurse working in the operating theatre. I felt it was the perfect job where I was able to care for patients in the kind empathetic way the staff who looked after me had throughout all my surgery.

I delayed this till 2009 and started the course in September. I had surgery in December 2009 to remove the osteotomy plate but was back doing my training in theatre in the January.
I have never let my condition stop me doing what I want to do.

I got my diploma with commendations in August 2011 and now work with anaesthetists assisting them in looking after patients having Anaesthetics.

At 24 I am able to look back at the surgeries and experiences I have had with pride and happiness as I would not be the person I am today if I had not had those experiences.
I also have a great love and respect for my parents who have been there with me and given me the love and support to stay positive, focused and determined to keep going no matter what.

My advice to young people growing up with DDH is never let it stop you, even when it’s really painful and doesn’t look like you can get a quick fix keep persevering. You can do whatever you want to do if you put your mind to it. Also when it comes to bullies, I can honestly say ignore them as one day you will look at what they become and they will pale in comparison to what you can achieve.

My future plans are to get married to the greatest guy ever in October 2014 and keep these hips going for as long as I can.