The Day we were on TV for Hip Dysplasia

The day in the life of parent can be unpredictable and what happened to Erin and I yesterday was surreal from the moment we woke until we fell into bed some 17 hours later. Most people will know that my beautiful third child was diagnosed with DDH at the tender age of 22 months. She has endured countless appointments, twenty four weeks in spica and had major hip surgery and still lives with the legacy of DDH. All this before she even starts school. Prof Clarke, who is the leading expert in the UK and treats at Southampton Hospital released a paper this week outlining the risks of baby swaddling on hip health. His findings were not a surprise to me and I have blogged about safe swaddling previously, these findings are not new but it is something I did not know until I started reading about DDH. Steps Charity run a campaign each year and they too can offer advice on safe swaddling, again many are aware of the correlation between tight swaddling and DDH. I am not against swaddling per se, swaddling can soothe a fractious baby, swaddling can stop the moro reflex which wakes babies up as they are drifting into deeper sleep. Yet research has shown that if a baby has an unstable hip and that hip is then restricted be it from spending to long in carseat, badly designed hip carriers or from tight swaddling it can exacerbate a condition that started in the womb.

Erin was not a baby deemed to be at risk of DDH (a full explanation of risk factors can be seen here) , yet she clearly had an unstable hip. She was swaddled, but lightly we did not know that she had a pre existing hip problem. How would we have known unless all babies are scanned at birth or in the early weeks, which is something we would like to see implemented in the newborn screening programme. Whether the swaddling exacerbated a condition I will never know. It doesn’t take away that Erin’s health visitor failed to recognise the clinical signs off DDH which caused a delay in her treatment. I am more hip aware now and whilst (obviously) not all swaddled babies will get DDH there is currently no way of knowing which babies have unstable hips that this practice of tight swaddling will affect. There are also many babies that are not swaddled that go on to be diagnosed with DDH.  I have been loud about DDH in the past and always get involved with Healthy Hip Week and I have written to a letter to my MP to raise awareness of this condition.

Our experience led us to having the most eventful day yesterday.  I was first contacted on Monday evening about 9pm as Daybreak were  looking for someone to come and talk about having a child with DDH.  However the person needed to be in London as it was for the following morning.  By luck I happened to be visiting family in London.  Within half an hour we were signed up and told that a  car would pick Erin and I up at 5.30 am.  I was then spun into reality realising I only had a pair of jeans and jumper to hand.  I rummaged through our hosts wardrobe until I found what I needed, thankfully Erin is well known for her gorgeous dresses and I had a dress in my bag perfect for the occasion.  After barely sleeping as my head was spinning I found myself in hair and make up at 6.15 am.  Meeting Dr Sarah Jarvis was lovely and we had a quick chat before we were on air. Lorraine calling Erin a cutie was a highlight (she is actually so tiny in real life).   The experience was very quick and I was left feeling a little frustrated as I had so much I wanted to say!  On the way back in the car I started recieving more calls and soon had Channel 4 and 5 on their way to do an interview before again going to ITN to be on the lunchtime news.

Erin thought it was all a great adventure and enjoyed seeing herself on the TV monitors in the studios.  She was really chatty before the recordings but went quiet when we were on air.  I was really pleased to get Steps mentioned at ITN as they really are the source of information that I want parents to use, along with Healthy Hips and One Hip World.  I had more of an idea what to expect by now and I think I was able to say a bit more.  The other consultant, Dr Alastair Sutcliffe, that I was speaking with was very complimentary to me and told me I was very knowledgeable and educated!  He himself has become a professor and will have a very interesting paper published next month.

I could not have planned on this happening and I am thrilled that we got people talking about hips and DDH.  I would like to be able to talk about late diagnosis as this is what causes me personally the biggest heartbreak.  I know that had Erin been diagnosed at a much earlier age her outcomes could have been different and her treatment much less invasive.  However I feel a small victory for DDH yesterday.  We are fighting back and raising awareness.  I would love to be able to share Erin’s whole story in the national media as there is so much more to say.  Hopefully one day the opportunity for that will occur but until then I will continue to do all I possibly can to raise awareness.

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