I would like to think that Erin’s late diagnosis has not been in vain – Emma
A few months back, Miss J started to have trouble with her leg. It caused her some wobbliness, the creasing on her thighs was uneven, we noticed a clunk with nappy changing. Doctors thought it all pointed to one of her hip joints being out of place and not developing properly. This was serious stuff.
My friend, Emma, supported me in pushing for a Consultant appointment and after much anxiety, we were very relieved to see a perfect little pelvis there on the X-Ray screen. But some families aren’t so lucky, some babies and toddlers have to go through many months of operations, casts and physio because detection happens too late.
So, I’ve asked Emma to share her experiences of Developmental Dysplasia of the Hip with you. This is important stuff – a baby you know could be affected and early detection can make a huge difference.
Over to Emma…
Have you heard of DDH? Do you know what the symptoms are? Possibly not, I hadn’t and I didn’t, not until it was too late, maybe you have heard of clicky hip? A name that drives me crazy as it sounds so trivial. My third baby, Erin was born November 2009 and nothing remarkable about her development was noticed until she didn’t learn to crawl or move about. At 12 months Erin finally started crawling about, but still she didn’t walk.
Her DDH was missed at birth, the six week check and her nine month developmental review. There really is no excuse for this. DDH or Developmental Dysplasia of the Hip is when the hip is unstable, it can be sublaxed, too loose or totally dislocated. The hip is a cup and ball joint and if the ball is not correctly fitted into the socket (cup) the socket can fail to grow. The longer the ball is not in place the more devastating and complex the treatment required. In Erin’s case the DDH was not diagnosed until she was almost two. Two years with the joint failing to grow in the correct way. Two years of bone growth that didn’t happen.
This late diagnosis has meant that Erin has endured six trips to theatre. Six times I watched my daughter being put into a deep sleep whilst surgeons worked their magic. Five times she was cast from belly button to ankles. Twenty four weeks she was cast in total. Erin had a five hour operation to build a hip socket, her socket was pinned whilst bone grafted to bone. She is brave beyond her years. She knows the working of a hospital more than most adults do in their lifetimes. She is likely to require more invasive surgery throughout her life. She is restricted in what she does. She does not move freely or with ease. I feel that I missed out on her toddlerhood. Hospital visits rule our calendar. We never take walking for granted.
All parents, caregivers and health professional need to look for the signs. An amazing 95% of cases can be corrected without surgery if diagnosed early. Yet too many babies are missed causing often unnecessary trauma and treatment with no guarantees of success.
The signs to look for:
- Deep, unequal creases in buttocks or thighs.
- When changing a nappy one leg does not seem to move outwards as fully as the other, or both are restricted.
- Your child crawls with one leg dragging
- One leg appears shorter than the other.
- A limp if one leg is affected or abnormal waddling if both legs affected.
I would love for Erin’s case to be a reminder to others. I would like to think that Erin’s late diagnosis has not been in vain. I want some good to come from Erin’s suffering. This week 11th March is Healthy Hip Week, please shout loud and share this information. If you are concerned don’t delay insist on an xray.
Thank you, Emma.