Here is the story of one mums fight against the social stigmatism associated with a child in a cast. She overcame the obstacles place before her by hip dysplasia and build a company to help parents of newly diagnosed children. Follow along as she tells you how it all happened;
Hi my name is Sam Bowen and I am the Director of Hip-Pose Ltd (click the link to see the wide range of products offered by Hip-Pose) a clothing range for babies and toddlers being treated for hip dysplasia. My ‘story’ is going to sound familiar to many parents of children with this condition, but also has a big difference which lead to me setting up the company.
My daughter Lucy was born at term but was very small and extended breach. When you see your newborn for the first time and their left leg is bent behind their head like a yogic master you kind of expect there will be consequences! Despite checking however her hip dysplasia was not detected.
Because of her small size, Lucy spent two weeks in a special care baby unit and various tests were done, one of which being a genetic test. These first weeks were taken up with learning the enormous task of how to be a parent and wishing there was a ‘rule’ book written about it.
At six weeks we took Lucy for a routine hip check and were upset, but perhaps not surprised, to discover that her left hip was dislocated. She weighed just over 6lbs at the time and had to be fitted with the smallest Pavlik harness they could find. I remember feeling numb and very protective of my tiny baby as this alien and constricting harness was put on her. The timing of the DDH diagnosis could not have been worse as just a few days before, we had learned that Lucy has a unique genetic fault on two of her chromosomes. Because it was unique, there was no evidence to what the future would hold apart from it being bleak in terms of her health and development.
The nurses who treated Lucy were very kind and helped me to focus on the DDH as something that was treatable and could be fixed. It was summer, so although it pained me to have to cut up all her lovely new clothes to fit over the harness, at least she would not be cold. I was instantly hit however, like a truck in the face, when complete strangers would look at my daughter and gasp or make senseless comments. Luckily Lucy took to wearing a harness with ease, although it did make the Colic a little more difficult as she couldn’t lie on her front.
After six weeks of treatment the harness came off, the left hip had realigned and all looked normal, so it was devastating that at the six month check up it was discovered that it had come out again. This time we were talking about surgery and she was still very little. A new team of people swept into our lives, to join the by now growing team of pediatricians and therapists helping with Lucy’s medical and developmental needs.
I still feel genuinely lucky that the team treating Lucy’s hip dysplasia were so fantastic. They treated me like an equal and wanted my opinions, they were humorous and yet extremely professional and most of all they doted over Lucy. It was decided that due to Lucy’s slow growth, we would wait until she was a year old to do the surgery. As the date drew closer, I started to panic about coping when Lucy was in a Hip-Spica cast. The difficult nappy changes, how to carry her, whether she would sleep, how we could get her into a car seat/pushchair/high chair. The list of complications to our already complex life seemed endless. I was signposted to a charity called STEPS who provide advice to parents on DDH and lower limb conditions. We bought a Britax two way elite car seat with special hip-spica adaptations, our Occupational Therapist obtained a hip-spica chair on loan and luckily the lovely pink pushchair I’d treated myself and Lucy to was an ok shape to take her in a cast.
The day of surgery arrived, and we anxiously waited in a room with another couple whose daughter was due the same procedure. The mum and I quickly made friends and to this day are very close as it turns out her daughter also had a rare chromosome condition and our girls are now best buddies in the same class at school. Having a friend going through the same DDH journey proved to be really helpful. Today there are many social media sites with groups dedicated to DDH and the mutual support parents give to each other is heart warming and much needed.
I will never forget that first operation, as I soothed Lucy whilst she was anesthetised for the first time. Nothing prepares you for it, you just have to have faith and a lot of trust that the Dr’s know what they are doing. Overwhelmed with adrenaline, I spluttered out “Promise me she won’t die” shortly followed by “Promise me you’ll use the purple cast” luckily I said these in the right order! As crazy as it sounds, having a coloured cast seemed the only way to me to avoid the horrible comments I’d heard other mums face. One local mum had told me that on her first day out with her daughter in cast, she had been approached by a stranger who’d asked if she had dropped her child down the stairs! Now I know a full hip-spica cast can look a bit alarming, but really I was speechless when I heard this, and very angry.
It was now approaching winter with frequent rain (like gremlins the cast must not get wet we were warned!) so I designed and made a pair of waterproof trousers to fit over Lucy’ cast. We still had many other medical and therapy appointments to get to plus I refused to keep her shut indoors for the three months of treatment. At one of her hip checkups, the nurse and Surgeon both remarked on her trousers saying they had never seen anything like it before and how wonderful they were. I also noticed that when the trousers were on no one took a second glance at us; it was as if the cast was invisible. Encouraged, I made the trousers in a range of fabrics and actually had fun dressing my ‘hip kid’ as the months passed. They also came in useful after the cast was finally removed as Lucy’s legs used to being held apart, stayed in that position for a couple of weeks. The hip-spica trousers allowed for her stretched ligaments to contract in their own time and not be forced into regular clothes.
At about this time, it had become clear that I would not be able to return to work as Lucy needed specialist care and her small army of therapists produced a gruelling schedule for us. I can’t say that giving up my career in Museums was easy, I mourned for it for a long while. However the surgeon and physiotherapist continued to say I had a great idea with the clothing. So I went back to the drawing board and created a specially designed sleep suit and a romper to be worn over Pavilk harness. The hospital staff provided me with willing parents happy to trial the designs and I gave them a sleepsuit as thanks. I got their feedback and comments and one lady very kindly agreed to her daughter being the ‘model’ for Hip-Pose.
The creation of Hip-Pose (a name my Mum came up with!) was a whirlwind journey. I got a business mentor, registered as a Ltd company, won a £2,000 start up grant, sourced a manufacturer in the UK, designed my own website, got a logo, taught myself pattern making and finally went ‘live’ online all within a year of making that first pair of trousers for Lucy. If asked again, I really don’t know where I got the energy from to stay up late night after night and spending the few spare hours when Lucy was in nursery on the business. Looking back I realise now that that was my therapy, my way of pushing through the pain and grief of having a child with profound special needs. Everyone deals with the news differently and it felt imperative to me to create something positive out of a difficult situation. I had felt firsthand what it is like to feel embarrassed about your child’s treatment aid and be wary of going into social situations only to be challenged by another rude comment. I felt and still do feel passionately about helping parents to go about their everyday life as normally as possible at a difficult time. Dressing your child should be a fun activity and providing a practical solution to the problem was my main aim. I regularly get emails from parents saying what a difference my designs have made, one even called them a ‘life saver! It is a very niche market, but an important one, I have customers all over the world and work with hospitals that give a sleepsuit at diagnosis stage to help soften the blow of the news as well as educate parents on how to dress their children during treatment.
I hope to eventually reach out to every DDH parent and tell them about Hip-Pose, how to survive this difficult time and come out of it a little less battle worn!
Director, Hip-Pose Ltd