A guest post from Natalie Trice, a Mother, author and blogger raising awareness of DDH.
No parent ever expects to be told their child has a chronic illness but this happened to us when my son, Lucas, was four months old and diagnosed with developmental dysplasia of the hip (DDH).
DDH is where the ball and socket hip joint fails to develop correctly. In a healthy hip, the head of the femur is smooth and round and the acetabulum is a smooth cup-like shape and the two sit together like an egg in an eggcup. DDH occurs when the two don’t fit snugly together.
Each case is different and unfortunately Lucas’ situation was severe which wasn’t surprising given our family history. What was surprising is that he, like many children, slipped though the net and treatment started later than we would have wished. Thankfully I noticed uneven creases in his legs and demanding scans due to a family history of hip issues. It was only my awareness that lead to a diagnosis and more than one I have shuddered when thinking about what life could’ve been like for him if this hadn’t been the case.
With a diagnosis finally made I wanted know as much about the condition as possible so I understood the treatments being offered and could see a way forward for my son and family.
We live in an age when we think if we hit Google we will find the answers to everyone. That wasn’t the case six years ago when I searched ‘DDH’. My initial research threw up horrific images and worst-case scenarios that simply compounded my fears. I felt totally out of my depth and alone and I was struck by how little help there was for parents.
I wanted to hear stories from other people, see light at the end of the tunnel and just know it was going to be OK.
I didn’t find this and as Lucas spent the first three years of his life in and out of hospital I cobbled together as much information as I could so we could get thought it.
He had blood taken, bones broken and wore body casts that were as barbaric as the ones my sister wore nearly 40 years before him. If I said the terrible twos were terrible, I would be lying. They were horrific and ongoing. My beautiful boy was diagnosed with post-traumatic stress illustrating that DDH doesn’t just have physical impacts but also emotional ones that can reverberate around the entire family.
Finally things got better. He went to school; he loved playing with his brother and friends and had a passion for football and rugby. I had to let go and allow him to use those beautiful legs he had worked so hard to get healthy. That isn’t always easy but he needed to be like his peers.
One thing I have learnt is that DHH sometimes comes back and bites you and this happened to my darling boy and after three great years, in June 2015 we were told Lucas was facing more surgery.
My husband and I were totally floored. He was six and we just didn’t see his coming, why would we? This time he needed a pelvic osteotomy, his fourth and largest operation to date.
Ironically two days before he was wheeled into theatre we launched ‘Cast Life – A Parent’s Guide to DDH’, the book I wrote and wish I’d had as we started our journey.
I’m not a medical professional, although many did contribute to this book, but a mother who hopes her experiences and the determination of her son and strength of her family will help empower others and offer them a little solace.
Cast Life includes everything from clear explanations about the condition and the treatments involved to the products available to make life easier for children in casts. It also looks at family life, dealing with emotions as well including first person stories and parent comments. Over time I cobbled together information as we went along but didn’t ever find one solid resource that offered me comfort and solace.
Professor N. M. P. Clarke ChM, DM, FRCS Consultant Orthopaedic Surgeon, who wrote the foreword for Cast Life, commented, ““DDH is one of the most common congenital abnormalities and it is remarkable that there is so little information out there. This book is essential reading for the parents of children with the condition, as well as health professionals working with them, and I would love to see it in all clinics around the world.”
As well as writing the book, I’ve set up Spica Warrior, the UK’s only DDH dedicated charity and I am a member of the International Advisory Board for the International Hip Dysplasia Board and will be working with them to offer others the support we simply didn’t get. We are also keen to join forces with midwives, health visitors and GPs to ensure DDH is on their radar and that we are here to help.
Lucas’ journey isn’t over as he faces more surgery in May but we’ve accepted that DDH is now a part of our family and our life and whilst it isn’t the path I would have chosen it has made me stronger.
Cast Life is available on Amazon and 10% of the royalties from Cast Life will be going to this cause.
Natalie is an author, blogger and freelancer writer. As a mummy, wife, cat and dog owner she doesn’t get much free time but when she does she’ll be found drinking coffee, reading Grazia and dreaming of living by the sea. Lover of heals, wearer of trainers, she has many dresses but mainly goes out in her gym gear.