A mile in our shoes.

As soon as I saw that this carnival I knew I would join in. How do you cope? That is the question that Here come the girls have asked.  Rebecca wants to share stories from bloggers who get asked that question alot.  I have been asked this question so many times in so many guises. It’s normally the third question I am asked.

Question 1. What has she done or is it just clicky hips?

I normally have to control myself when answering this question, well part b anyway, JUST clicky hips? Believe me there is no ‘just’ about what my precious girl has been through. Six general anesthetics, five spica casts.

Question 2. How does she go to toilet / change nappy?

Much the same way as everyone else, it comes out the same place! You just need to be creative.

Then question 3. How do you cope?

The simple answer is not aswell as Erin did!

When I had the confirmation of the diagnosis I slid sobbing down the dining room wall. The enormity of what was to come consumed me (crikey I have tears even now when I think back to that telephone call).  I don’t need to tell Erin’s story I have done that many times. The journey has been hard emotionally, financially and physically. Thankfully I was in a position to take the whole treatment time off work – however that isn’t easy itself. I am used to working, used to that daily adult company and enjoy my job, you don’t go into teaching unless there is a passion for what you do, and without the love of your subject.

At times caring for Erin has been back breaking, the lifting and carrying of a heavy two year old weighed down by plaster and fibre glass hurts.  My arms ached from the lifting in and out of the car, up and down the stairs and in and out of bed. My back was tender.  Emotionally it has been really tough, everywhere you go you see children the same age as yours running around giggling, exploring their environment.  Not so when you are weighed down, when you can’t even sit unaided, there are so many missed developmental milestones.  That was tough.  I tried not to think ‘why us’ as, why not us?  Why did we deserve to not to have DDH invade our lives.  But even now Erin seems much younger than her peers, she is far more dependant on me than others.

The best thing about the situation has been the closeness that Erin and I share.  We are a team.  Erin was always to be my third and last and DDH has extended my baby phase with her.  I have enjoyed being at home with her.  DDH has also introduced me to some amazingly inspirational children that I have met through the charity Steps and a Facebook support group.  Sharing tears, laughter and wine with Northern Mum also kept me sane!

Getting through some of the days were tough, I am grateful that Erin loves sleeping as it provided me with a breathing space each day.  Also getting out, although a struggle, was normally worth it. We joined a music class and a toddler group for Erin’s benefit.  Both gave us lots of support.

What would I change if I could – for me I would like to see hip scans for all babies at six – eight weeks.  This happens in Europe and they have much lower rates of DDH and especially invasive surgery.  If treated early, results and intervention is so much better.  If, like Erin, it is not found till past 18months the success rate is lower with more long term disabilities and future treatment likely.  It will now be a waiting game for Erin, dreading every check up, watching for pain in knees and hips.  We don’t know what the future holds and this could have been put right.  Better training is needed for community midwives who missed the classic signs numerous times.

My advice to others in this situation is speak to Steps, they can provide equipment lists, reccomend consultants, they have information and DVD’s on caring for children in spica.  Arm yourself with knowledge, know and understand the surgery required.  DDH treatment is so variable with each consultant so do ask questions.  For example Erin has now spent 24 weeks in spica, compared with others having similar treatment spending 12 weeks.  But I do trust our consultant and he believes that this has been Erin’s best chance.

So how do we cope?  You just take a deep breathe and get on with it.  You have no choice.  Always do your best and accept that some days will be hard. For me coping has included using this blog to raise awareness of DDH.  I know I have reached out to others as I have an emails, phone calls and messages from others asking for advice and sharing thier experiences.  That for me is important.

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