The Unglossy Version of Hip dysplasia DDH No Holds Barred

This hip dysplasia post has been inspired by a couple of fellow DDH mummies.  It’s a bit or a moan and a rant really but frankly it needs to be shared and said. 

I tended to post smiling pictures of Erin in a spica cast, I tended to post about the positive days with hip dysplasia,  it is called self-preservation.  I wanted to show that hip dysplasia DDH (as tough as it is) doesn’t stop my girl.  I wanted to remain hopeful, Erin was brave so I needed to be to.  However the reality was that not every day was easy, they were many days of tears – mostly mine, there were sleepless nights, there were cramps, there was frustration and boredom, there was lack of money and a lack of routine.

I wasn’t there on my sons 8th birthday, instead I had to be on a hospital ward at 7.30 am for another cast change.  I watched my son open his presents, but in reality I was already in another place, I was already thinking about the day ahead.  I had a hungry toddler to entertain who was not allowed to drink or eat.

I took Erin to theatre, watched her as she placed her hands over her mouth crying that she wasn’t going to sleep again.  A two yr old that knows about the anaesthetists tricks – his distraction techniques.  A two yr old that knows too much about hospitals. 

Some days were so full on, tired from a bad night, yet you need to entertain the child that cannot walk, the child that cannot go, choose and carry their own toy.  The child that cannot be left with a drink incase they spill it down their damned spica cast.  Likewise with dinner, you can’t risk food getting where it shouldn’t and causing a reaction or infection. 

Going Out with Hip Dysplasia

Going out became a challenge, extra buggies and car seats needed to be bought.  Highchairs in coffee shops are not suitable for a quick stop.  Imagine trying to change a nappy of a child in a cast on one of those changing tables you find in shops and restaurants – it cant be done, remember you can’t lift their legs, you have to flip them right over, they can’t help you out, they are ridgid. Stuck.  You can’t potty train a two yr old – remember they can’t sit.  It means an extra time and the cost of nappies – plus the extra pads and taping that needs to be done for a child in spica.  

When you take a child in spica out, you need to park where you can open your car door wide.  There is no bending them.  This is physically demanding work for the carer too.  My back has not been the same since spica.  You get looks, you get my comments.  My favourite being the man who shouted at me for parking in a disabled spot. 

He shouted that I didn’t look disabled as I got out of my car (forget hidden disabilities of course) I stayed quiet, opened the back door and slowly, carefully maneuvered Erin out.  ‘Good job’ I replied looking him directly in the eye – otherwise looking after this one would be near impossible.  At least he had the good grace to look embarrassed!

Parents Working When Child has Hip Dysplasia

Many DDH parents cannot work – nurseries and childminders not able to look after a disabled child.  But more importantly and practically our children have surgery every six weeks.  That means every six weeks needing a week to recover from surgery.  They are in pain, they ache, they are swollen and sore.  They have an operation and all the risks that we as parents sign each time.

There is not much official support out there.  There is not much advice out there.  The long term implications are unknown.  We head into surgery believing, hoping that we have made the right decision – it’s not an easy decision.  But we are holding off the (often) inevitable early hip replacement.  We hope we are giving our children the best chance of a life with no pain, but we don’t know. 

There are no guarantees for us.  Our children maybe fixed easily – but they may not be.  We don’t know and won’t for more years to come.  The later diagnosed the greater the chance of permanant disabilityand problems.

Our brave, courgeous children keep us going.

These children with DDH are hard work – we don’t mind doing it – it’s our job.  They are, our pride and joy.  So please don’t think it easy – don’t think they are the same as all other children, just in a cast.  They are not.  Therefore we will take the support we are offered.  That support comes from friends and family who give their time.  It also comes from the authorities who give us the blue badge, DLA and carers allowance. 

We need it, believe me and if you want to read about Hip dysplasia we recommend Cast Life.

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