adult hip dysplasia, arthritis, disabled writers, dislocated hips, hip dysplasia, Memoir, mentoring, osteo-arthritis, pavlik harness, spica cast
June is Hip Dysplasia Awareness Month. I was born with double hip dysplasia. Around one in a thousand babies have some degree of hip dysplasia at birth. Some cases are related to breech birth and other physical factors, some are genetic. The standard tests at birth are based on a manual rotation of the baby’s hips, if there’s an audible clunk the hip is unstable and it is an indication of possible dysplasia. The tests originated in the 1950s and are still used today. However it’s a bit hit and miss, it depends on the practitioner and the nature of the dysplasia, bi-lateral is often missed because there is no discrepancy in leg length to complement the click test. Put it this way, mine didn’t show up and there was no click with my son either who had the test in 2002.
I often wonder what my life would have been like if that test had been positive. Infant dysplasia can usually be cured by the wearing of a harness (The Pavlik Harness) in the first few months of life when the bones are soft. This painlessly holds the hips in place, deepening the socket, and most people need no further treatment once this is completed. Yes the baby screams when it’s first put on but then they scream when they have their nappy changed so you can cope with it. Believe me this minor and short lived discomfort is nothing compared to what happens if the condition isn’t caught early.
My dysplasia was diagnosed at the age of three. My mother noticed that I ran everywhere on tiptoes rather than walking and fell over a lot. There was a trip to the GP. I was told to walk across the surgery waiting room after hours so he could see me walk. This is probably my earliest memory; I can still see the spider plants in the sunshine on the window and smell the plastic chairs and my Mum’s perfume. From here it was referral to the hospital, almost immediate double surgery and six months in a half body cast. This was the 1970s, parents weren’t allowed to stay with children in hospital, it was strictly visiting time only – imagine how traumatic that is for a three-year-old. They let me out still encased in plaster, I had to crawl to get around. It was summer, I was often overheated, and the cast itched unimaginably. I had to be held over the toilet whenever I wanted to go. My Dad made a ‘concord’ out of wood on wheels that I used to propel myself around the house and garden. I remember going really fast and flying of it a few times. When it was time to remove the cast I screamed my head off. It was terrifying, the technician tried to use and electric tool which to me it felt like torture, the noise was unimaginable and it was coming for me and my legs. Thankfully someone suggested cutting it away with shears and I could handle that with lots of soothing from Mum and Dad. My legs were withered and scaly. I had to learn to walk again. The treatment didn’t work and by the age of five I had to have more surgery.
This was the drill for the next twelve years, surgery, learn to walk, hips dislocate, surgery, traction, learn to walk… I had my last childhood surgery at seventeen. As you can imagine I had a lot of scars and not a lot of self-esteem. School sports were a nightmare. Intimate relationships were difficult. I was not alright. Luckily I had a very supportive family and I met my husband at a young and he has been amazing. I’ve had therapy though, to work through some of the childhood traumas. This month of awareness has been very difficult for me because it has brought a lot to the surface.
As an adult I had a fairly normal life until I reached my late twenties, then came the arthritic pain. It was almost overnight. Remember how one minute Andy Murray was playing world class tennis and the next he was limping off court? That’s what it was like. One day fine, the next not. I struggled on for a few years but then I had a baby. A big bouncy baby boy. The pregnancy was really hard. I could barely walk by the end. The birth even harder, you can’t get into many positions when your hips don’t work. I had my first Total Hip Replacement at the age of thirty-four when my son was eight months old. The arthritis was ‘about as bad as it can be’. Two years later I had another, then another baby. You can do almost anything with this condition but it is very hard work. People don’t know you are suffering and most ‘hippies’ pretend they are okay because they just want to be like everyone else. I’m at the stage now where the original replacements have loosened and need redoing. I suffered a severe break around the implant a few years ago and that leg has never been the same. I am tired almost all the time. Sometimes something as simple as standing in the same place for ten minutes results in the need to lie down. I envy people who can easily do sport, who can go for long walks in the countryside without feeling it for days afterwards, people who are thin and lithe and straight-backed. I do what I can, I swim and use the static bike but I have very weak muscles in my pelvis so everything is a struggle.
My oldest son, Noah, didn’t have a positive clunk test but I knew he had it. I took him to a cranial osteopath for gripe and he told me the left hip was out. We went back to the hospital and demanded an ultrasound based on family history. It came back positive. Noah went kicking and screaming into the Pavlik Harness. After crying himself to sleep the first day he slept for 24 hours. The second day he was his normal self. He learned to crawl with the harness on and when it came off it didn’t stop him walking at the normal age. What it did do was ensure that the socket formed properly. After three months he didn’t have to wear it anymore.
Noah with his Dad, Pavlik Harness visible.
I’m writing this for two reasons. When I posted about June being hip dysplasia awareness month on Facebook, two friends said they’d had it as a baby and one said one of their children had it, add to this the three people I knew already with the condition. It’s a lot more common than current levels of awareness would suggest. If you are about to be a parent or have just had a child and have any hip dysplasia in your family insist on an ultra-sound for your new-born, even if they pass the manual test. You might not even know there is familial dysplasia; it might just be an Uncle who limps because one leg is shorter than the other, a grandparent who had a hip replacement at a young age, whatever doubts you have act on them. An early ultrasound is much better than years of surgery. Secondly, many adults have slight dysplasia that hasn’t been diagnosed; problems only arise in later life. If you have deep hip pain after walking or sporting activities get it checked. There are lots of things you can do to slow the arthritis caused by dysplasia, there are special exercises, diets and supplements, aids like knee braces, footware. Don’t ignore it because that way lies years of crippling pain and inevitable replacement surgery. If in doubt – check it out.
For further information on hip dysplasia visit http://livingwithhipdysplasia.com/ and https://hipdysplasia.org/
Sign the petition to improve child screening in the UK https://www.change.org/p/implement-scanning-for-all-uk-newborns-babies-for-hip-dysplasia
I’ll be blogging throughout the month about this.