Isabelle’s Story

Blog » Hip Dysplasia (DDH) » Personal Stories

Isabelle was born with bilateral hip dysplasia meaning both her hips were fully dislocated. She wasn’t breech, nor do we have any family history of hip problems so when the doctor identified her ‘clicky hip’ at her 6-week check-up, we weren’t particularly concerned. Sadly, We weren’t seen for an ultrasound until she was 5.5 months old due to a hospital computer system error. The delay in her being seen made the diagnosis even harder to accept as generally, the earlier the condition is detected, the easier it is to treat.  She was placed in a Pavlik Harness, but this was abandoned after 5 days due to a trapped femoral nerve – and the view it was unlikely to work due to the extent of her dysplasia.

The day we got the news she would have to have surgery was undoubtedly the hardest of my life – I felt every emotion possible: anger, guilt, disbelief, fear, pity. I grieved for the things she would no longer be able to do and the way I’d imagined our first year together was going to be. It took a little while, but I eventually accepted our situation and realised the only way through this was to channel all of my emotion into being brave and strong for Isabelle and for our family.

After numerous discussions with the hospital, we decided to get a second opinion regarding her upcoming procedure. We consulted 3 surgeons who all had totally different treatment plans.  We quickly learned that there are many, many different approaches to treating DDH.  The widely recognised route for Isabelle, based on her age, was to treat one hip at a time and to wait until she turned 1 to proceed with some of the surgery. This would have meant 4 operations and 6 months of casts. However, we desperately wanted to treat her while she was really young and minimise the cast time, so we decided to go with a surgeon who would treat both together now.  Through our hours of researching and conversations with specialists we also learnt that there are pros and cons to every treatment path. Although this route minimised cast time, it came with many other risks and concerns. I came to realise there is no ‘guarantee’ with DDH treatment. The surgeons didn’t advise, they just told us the facts, meaning we spent a lot of time questioning our decision. My advice to other parents would be to educate yourself as much as possible and get different opinions – then go with the route that feels right and manageable for your family.

The lead up to the surgery, the thought of the anaesthetic, the risks and the spica cast was the most mentally challenging part of the whole experience.  Nothing could have really prepared me for dressing her in her little surgical gown and the agonising wait while she was in theatre. A warning to other families, by far the hardest part for us was collecting her from recovery.  She was inconsolable, in pain and hooked up to machines which was deeply distressing, made even tougher by how powerless we felt.
But, alongside the anxiety was also an enormous sense of relief that it had gone to plan. I am so grateful to our wonderful surgeon and the amazing nurses who took care of her so well.

After surgery, she was placed in a full spica cast which meant she was in a cast from waist down – her only mobility was in her head, arms and shoulders. The cast is heavy, moving her around was tricky and the nappy changes are laborious.  Despite its challenges, we quickly adapted to her new needs and life changed but amazingly, Isabelle didn’t! She was smiling again far more quickly than I’d ever imagined. One of my biggest worries was that the cast would change her temperament and make her frustrated for 12 weeks but that couldn’t have been further from reality. Our resilient girl never let the cast hold her back and continued to be the happy, relaxed baby she had always been.

We got her a bean bag which was our most useful purchase and hired a special car seat.  She continued to enjoy her play gym and daily tummy time. I prioritised getting out and about and socialising as much as possible as I was determined not to let the situation isolate us. We went to our weekly sensory classes and the mums I met at our antenatal classes were lovely and so supportive.  There were some testing days of course, but these were totally overshadowed by our over-riding sense of determination and hope.

Her cast change after 6 weeks was an anti-climax with her going back under anaesthetic. The hospital appointment was almost as emotionally difficult as the first time around, but again she adapted quickly, and those last few weeks went by quickly.  After 12 weeks Isabelle’s spica cast was removed and the feeling of being able to see and cuddle her little body and legs was unbelievably overwhelming. I will now appreciate cuddles with her in a way I never could have pre-cast. X rays showed the treatment has worked and she is now in a removable brace for 3 months. I long for the time when she can roll again, sit up, and crawl, but I also know those milestones will be even more special given everything she’s been through.

Our journey still isn’t over, and we will wait to find out if she needs an osteotomy (a different surgery) and further spica cast time when she’s a little older.  I would never have chosen DDH for Isabelle or our family but in a funny way it’s made us stronger and put life into perspective. Spending so much time in children’s hospitals over the last few months has made us appreciate how lucky we are that Isabelle’s condition is fixable and one day all of our stress, sleepless nights and missed milestones will be a distant memory. It’s taught me the importance of empathy, patience, and the preciousness of time. Most importantly, it’s shown me what being a mum is really about: loving unconditionally and putting Isabelle’s physical and mental needs before my own.

Thank you to Steps for providing support throughout our journey. My sincere hope is that more can be done to raise awareness of DDH, the risk factors and the symptoms to look out for, to ensure earlier detection and less invasive treatment for more babies.

To those facing difficulties with hip dysplasia: don’t despair, it will not defeat you. The anticipation of treatment is worse than the reality and there really is light at the end of the tunnel.