When she eventually joined us, her left leg was raised over her head like a yogic master which looked odd to say the very least! Initially we were told that everything was fine, however at her six week check up, Lucy’s left hip was found to be out of position and a diagnosis of hip dysplasia was given. She was put into a restrictive harness (Pavlik Harness) which held her legs at 90 degrees to her hips and her legs in a frog like position. She had to wear this 24 hours a day for 6 weeks. No baths, no tummy time, no ordinary clothes ... yes I did just say no ordinary clothes! Because of the odd shape the harness kept her in, ‘normal’ clothes did not fit. We had to cut all her new rompers up the sides and even loose fitting dresses revealed the obvious straps of the harness. After 6 weeks and an all clear the harness came off, sadly at the 6 months check up however, the hip was back out again and an operation was now required. Following three hours of surgery, Lucy was wrapped up in a solid hip spica cast from her chest to her ankles.
Her legs were now at a 45 degree angle and she weighed half a stone heavier due to the cast. A small gap had been left for the nappy which we were told must be changed regularly to avoid getting the cast wet. We stayed in the hospital with her, caught the norovirus, and well you can imagine what the first 48 hours back at home were like! Learning how to care for a child in cast whilst being violently ill yourself, is a baptism of fire. Learning how to cope with rude comments and strangers staring at your child in cast when out and about, well that’s a whole different kind of hell. To avoid this and also keep the cast dry during winter, I designed and made a pair of waterproof trousers to cover it. These worked a treat and I made more in different fabrics and actually enjoyed dressing Lucy again.
The NHS staff treating her hips really loved the trousers and said how useful they’d be to other parents. Lucy’s hip dysplasia diagnosis, at six weeks old, had come at the same time as the much more serious diagnosis of a very rare genetic abnormality. As well as facing an unknown but probably bleak future, we were on the treatment treadmill of a fixable condition. As odd as it may sound, this was some comfort as it was something that could be cured on a big long list of medical issues that might not be. The operation also sparked me to request a cardiac scan, revealing a hole in her heart that needed surgery but probably would not have been detected otherwise, so in an odd way her hips saved her life.
By the time she was in cast, I realised I was not going back to work and would become Lucy’s carer. I didn’t accept this idea easily, so decided to turn my designs of clothes for children being treated for hip dysplasia into a business. I didn’t at that point know the first thing about running a business, but it’s amazing what the need for a distraction can motivate you to do. I found a business mentor, designed a range of clothes and trialled them with parents and their babies, found a UK manufacturer, won a start up grant, designed a website and started selling online a year after Lucy was in cast. I worked all the hours available, when she was in special nursery, when she slept (not often!) and during the evening. Working that hard helped me push through the pain of having a profoundly disabled child, it saved my sanity and helping others really boosted my confidence. I also couldn’t have done it without the enduring support of my husband and Mum (who came up with the name Hip-Pose). They saw that I needed to create something of my own and gave me the space do it.
Now nearly four years on and I sell to families around the world and even to the same hospital who treated Lucy as they give newly diagnosed babies a Hip-Pose sleepsuit.
My designs won Gold for innovation in the Prima Baby Awards 2015 and I have written a chapter on clothing for a book on Hip-dysplasia that is being published later this year. I’m also a parent advocate for the International Hip Dysplasia Institute. I love getting messages from customers telling me how the clothes I designed helped them through a traumatic time and am so happy that from out of the darkness came something positive and helpful to others. To any other Special Needs parent who ever wondered “can I start my own business?” I’d say have a go. I’ve met some of the most resourceful, creative and strong people I know on this journey and they are all parents of special needs children. Visit the Hip-Pose website http://www.hip-pose.co.uk/