Early detection and treatment of hip dysplasia (DDH) is vital to prevent lives being blighted by disability, pain and early hip replacements, says Natalie Trice, founder of DDH UK.
Chatting about my work recently, a friend commented on how many charities are founded by parents who are mad, sad or both.
This might sound rude, but I thought back to seven years ago when my second son, Lucas, was diagnosed with hip dysplasia (DDH) and that is exactly how I felt. And some.
DDH, often known as ‘clicky hips’, occurs when the hip joint fails to develop correctly. My sister and two cousins were treated for the chronic condition when they were children, so I pushed for scans after noticing Lucas had uneven creases (a giveaway sign) and the results confirmed my fears.
In a matter of minutes our lives went from baby massages, coffee mornings and soft play to second opinions, more tests and surgery being scheduled, all with my first son, a toddler, in tow.
“Hip dysplasia isn’t life threatening but this doesn’t diminish the anguish parents feel and the painful treatment children have to endure.”
Given that an estimated one in six newborns will have an element of hip instability and two to three in every 1,000 infants require treatment, I thought there would be loads of information for me to read. How wrong I was. My internet searches unearthed horror stories and depressing images that overwhelmed me and made me hold my sons a little tighter as I wondered how we would cope.
Naive and simply unaware that DDH wasn’t a broken bone with a quick fix, I first handed my son over to our surgical team when he was eight months old, hopeful that the operation would be a success. For Lucas it wasn’t to be the case and five operations on, it still breaks my heart to walk the hospital corridors as I take or collect him from theatre.
Whenever we faced more disappointment and another challenge I expected new information to have appeared. It didn’t and I felt alone and frustrated all over again.
As a result of becoming a ‘hospital mum’, navigating the murky waters of DDH, my PR career was put on hold but as I sat in a crowded, clammy clinic waiting room yet again, my childhood dream of writing a book returned to me.
If no one else was going to put the pieces of the hip dysplasia puzzle together, then I would.
While I fancied myself as a Carrie Bradshaw-type, sat in a New York loft, latte in hand and new Mac on my knees, the reality was very different. I bashed away on my old laptop as the boys watched cartoons and the puppy chewed my shoes, writing a proposal that I sent to agents and publishers.
The rejections came back thick and fast but I hadn’t spent nights on suffocating hospital wards listening to my child scream in pain only to be told DDH was too niche to talk about.
My son hadn’t ever given up, so I wasn’t going to either.
One cold, dank November afternoon as we slaved over spellings, an email offering me the book deal I so desperately coveted arrived.
I wrote Cast Life in two months and it was the best therapy ever. Written by a parent, for a parent, it isn’t loaded with medical jargon, but instead the facts and treatments are explained in a clear, easy to understand way with expert comment and case study anecdotes added. It looks at what to expect, suggests questions to ask surgeons and explores the emotions that are experienced but never talked about.
“Five operations on, it still breaks my heart to walk the hospital corridors as I take or collect Lucas from theatre.”
Ironically Cast Life and Spica Warrior, the charity I founded at the same time, were launched just two days before my darling boy had his pelvis broken and reconstructed. It was an operation we hadn’t seen coming – I know now that DDH has a habit of coming back and biting you on the bum when you least expect it. This was a big one that took hours, required a week in hospital, eight weeks in a wheelchair and even more pain for a six-year-old who just wanted to be on the football pitch with his brother. Damn you DDH.
Fourteen months on and not only is Cast Life selling globally but Spica Warrior has grown into DDH UK with Gemma Almond, a Paralympic swimmer, as a proud patron. Alex Aarvold, consultant paediatric orthopaedic surgeon at Southampton University Hospital is our medical advisor and, for me, being on the advisory board of the International Hip Dysplasia Institute is a dream come true.
No, DDH isn’t life threatening but this doesn’t diminish the anguish parents feel and the painful treatment children have to endure.
Thanks to a team of charity volunteers, and international admins on our Facebook forum, parents now have 24/7 access to accurate information as well as the support and friendships I desperately craved back in 2009. Early detection and treatment is vital to prevent lives being blighted by disability, pain and early hip replacements, therefore awareness-raising is a continued focus for us.
DDH could have destroyed us but instead it has made us so much stronger. I hope my brave, spirited son one day sees that while Mummy was mad and sad once, today she is proud that his hip journey, which sadly still isn’t over, has had a massive impact and the positive ripples are being felt around the world.4618 Views
Natalie Trice is a Devon-based author, charity founder and freelance writer.