I have been on a media frenzy. I am really proud of what have achieved for parents of a child with ddh and more importantly for children like Erin. This week I got a letter about Erin starting school. I am not yet entirely ready for this next stage, she is too young. She has been through so much. This past week I have put our story out there, out into the national media and the support has been awesome. My ddh family have tweeted, shared status’s and sent us many a message. We are united in our war against ddh, we back each other up. I am grateful for their support, encouragement and love.
One of the most amazing people I have talked too is Hannah, founder of happy hips she was diagnosed at 18 months and had a total hip replacement before age 20. That could be Erin’s future, I just don’t know but that is my fear and my passion for the fight against ddh. What I would do as a mother to take this on her behalf.
I have also had a small minority of negative comments. The comments disagreeing with the research or questioning the findings I am happy to debate. There are far more causes of ddh than swaddling alone. I have never said that tight swaddling will cause your child to develop ddh. My personal opinion is that tight swaddling could aggravate a weak hip, that is what Prof Clarke said. My point is that we don’t know which children have weak hips. We don’t scan at birth like much of Europe therefore we don’t know which babies have immature hips. Prof Clarke is the leading expert in the UK and the only UK expert on the ihdi board this is where expertise comes from, I know several children treated by him. At no point did I or the health professionals that I was on the national media with say that swaddling is the root cause or the only reason ddh presents in 1 in 1000 babies. Mostly girls, mostly first born and mostly left hip. Erin is our third child and had a dislocated right hip. She hardly fits the mold. 98% of those babies diagnosed at birth will be successfully treated by a pavlik harness alone. How I wish Erin was diagnosed at birth. Erin is a much more statistically to need more treatment. Her outcomes are not so positive. She has already had a closed reduction, arthogram, open reduction and salters osteotemy and the ultimate spica explosion.
Yet there has been some crappy comments that slice like a knife. Stupid ignorant trolls who cannot write except for in text talk. I am happy to read about people debating the use of swaddling. This is all raising awareness of ddh. Personally I would love the chance to be on tv debating and highlighting how late diagnosis affects our children. I won’t stop raising awareness even when I’m told that my girl has hip dysplasia because I’m a crap mum who squeezed her daughter too hard.
What an uneducated thing to say. Well done to that writer. I just wonder though where these people get off? Why do they feel it is ok to be offensive behind a computer screen. I wonder what they would say to the persons face.
6 Responses
You have my full support Emma! I didn’t swaddle my daughter but she does fit the first born daughter, left help mould – it doesn’t however stop me wracking myself with guilt in case I did something wrong when she was a little baby – I know I didn’t but I still feel guilt at my daughters condition.
When you put yourself out there and stand up for what you believe in you unfortunately are in a very vulnerable position – but try to ignore your critics!!
You were the first person to point me in the right direction when my daughter was diagnosed and I truly value your advice and support.
Much love xx
Thank you Cherith. I know I put myself out there and I’m strong but those that badmouh me and Erin I want to knock out lol I will not stop though 🙂
Hi Emma,
There will always be people who disagree with things that are said, who ignore the facts because they think they know best. It happens in every walk of life and sadly it all too often stops people from saying anything publicly, because they are fearful of the backlash. Debate is healthy and if anyone has a differing opinion then it would be much better to say “I have heard xyz – what are your thoughts on that”, or… if speaking from experience, then tell their story as it is. There are also nasty people, who like to make inflammatory comments and relish in the resulting response. Rather like lighting the touch-paper and retiring. Personally I wouldn’t even respond to such comments – life is too short and your time can be better spent increasing awareness of the facts! All we can ever do is to stay faithful to the facts. Keep up the good work 🙂
Thanks Sali, it bothered me for all of 15 mins. I know I am spreading good information. I am in touch with those with ddh. They are the ones I care about. Those and my family who know that I am strong. I wouldnt do this otherwise.
Emma you have been truly amazing. I am so pleased that you are fulfilling what you intended to do by highlighting this. The ignorant comments are just that! How dare any one comment on your parenting- however this is the point even that woman has thought about what you have said send would be careful in swaddling a baby – despite her ridiculous comments. Well done you. I only hope when I start to highlight pots later this year I have half of your strength xxxxx I am in awe of you as a mother and a person for all that you have taken on.
Very proud of you mrs. remember you can’t change the world without ruffling some feathers x