My Little Girl and Developmental Dysplasia of the Hip

I am sat here, scratching these first words of a draft into my notebook at 4am, unable to sleep. Words have been flying round my brain in a jumbled, tangled mess as my brain tries to process what is going to happen.

Yesterday morning we took my 15 month old daughter to Bristol Children’s Hospital for an x-ray and consultation.  We had discovered a few weeks ago that my little girl has a a good 2 cm difference in her leg length.

It had only become apparent when she first began to practise walking, using sofas to cruise and pushing her little pushchair up and down the lounge. 

We noticed that she was walking with her right foot flat on the ground but her left foot on tiptoe and at a slight angle outwards.

Photo courtesy of John Rees

 

I didn’t really think anything of it at first.  I assumed that she would learn how to put both feet flat when she started walking properly.  But my mum noticed it and it reminded her of my sister who had Developmental Dysplasia of the Hip when she was little.

We were over my mum’s house a few weeks ago and mum was changing my daughter’s nappy.  She held my daughter’s legs flat on the floor and it was clear that there was an obvious difference in her leg length.

We took her to Gloucester Road Medical Practice in Horfield and the doctor examined her and measured her legs.  He immediately requested an ‘urgent referral’ to Bristol Children’s Hospital. 

She was x-rayed and diagnosed with Developmental Dysplasia of the Hip (also known as Congenital Hip Dysplasia), the same condition my sister had had.

In layman’s terms, DDH means that the hip joint is malformed, that it is a condition that a child is born with and that it often runs in families.  Because of DDH, my daughter’s left hip has become dislocated.

The consultant told us that my daughter will be admitted to hospital within the next few weeks to have the condition dealt with.  He told us that there were two certainties, the first being that when she comes out of theatre, her hip WILL be back in its socket. 

This will be done by one of three methods.  The second certainty is that she will be in a plaster cast, from her tummy to her legs, for four months.

The plaster cast will be very difficult, both for her, and for us.  She will not be able to crawl, let alone walk.  She will only have real upper body movement. 

I know that it will be a logistical nightmare, having two young kids and getting out and about.  We will need to get a new pushchair, high chair and car seat.  Because she will not be able to turn over in her cot or sit up independently, we will need to move her cot into our bedroom.

 

But I am not worrying about these things now.  I will deal with these things when we get to that point.  

For now I am worrying about her time in hospital.  I worry about the general anaesthetic.  I worry that she will pick up some dreadful infection while she is in hospital.  I worry about her being unable to shake off a simple infection because she will not be mobile.  I worry that, when she is under anaesthetic, the surgery won’t go as well as hoped.

And I simply worry about her being distressed, my poor, sweet girl.  She was scared yesterday both in the x-ray and when she was examined.  I know she will be dosed up with painkillers but she will likely feel uncomfortable and upset.

Yet, after scribbling these words down, I can put things into perspective a little more.  I am lucky compared to many parents!  I am worrying about my child having a hip operation, whereas some parents have seriously ill or worse, terminally ill, children.

We will deal with it!  We have no choice about whether to get her hip sorted out.  And, by the time Autumn falls later this year, our little girl should be as right as rain:-)

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17 responses to “My Little Girl and Developmental Dysplasia of the Hip

  1. what awful news. I read a quote that said “you never know how strong you are until you have no choice”. You can stay stong for your girl.

  2. Oh no, I can't even imagine how scared you must be but I am sure your little girl is in good hands. It won't be an easy time but I am sure your little girl will put on a brave face and help you all through it…

  3. My daughter was also born with hip dysplasia, luckily it was caught immediately. She had to wear a brace for the first six months, which was not fun in the least. It was mostly fixed, but she is 19 now, and sadly still has problems with her hips. They are not even, so when she does a lot of walking they do bother her. She did play soccer for years but last year, after being hit one too many times, she couldn't take the pain any more. She has seen many doctors, but will just have to live with it. I do worry for when she decides to have children though, I am not sure if she will be able to give birth or end up having a C-section. I hope your daughters dysplasia is corrected, it will be difficult for her and will most likely cause you a lot of tears. It is very hard to see your child in pain. I send you strength.

  4. Hi,

    My daughter has hip dysplasia, she was diagnosed in January after we were referred because she had one leg longer than the other. She had an operation 11 days ago and is now in a spica cast and will be until the end of May. She is 21 months old.

    I know exactly how you feel 🙂

    But to reassure you it gets easier and like you I tell myself it could be worse but that doesnt always help. No one wants to see their children poorly.

    I blog over at http://www.northernmum.wordpress.com and have written a fair bit about my daughter and life in a spica cast so that will give you some idea of what to expect.

    However this is what I would reccomend.

    Join Steps http://www.steps-charity.org.uk/CDH/DDH/ – great charity that offers lots of support and really useful guidelines by parents. they will send you a set of DVDs about spica care and what to expect.

    Dont worry about a high chair buy a totseat : they are cheap and you can take them anywhere and they are valuable in getting her to sit up and play.

    Buy a good bean bag…..

    Steps offer a £75 discount on the car seat if you apply for a grant. We hired a car seat for £75 so it didnt cost us anything in the end.

    Prams: wait till she is in cast, we were convinced that she wouldn't fit in her pram but after surgery with the help of some blankets and towels she fits like a dream.

    Our daughter is still in her own room, we pop in and turn her in the night but she sleeps really well (not as good as before) but sleep is important for all of you!

    Have a look at http://www.emmaand3.com – her daughter Erin has been in spica for 15 weeks so far.

    The first week was really hard, the second week has been easier. Our consultant was really good, kids adjust before we do.

    The actual operation: it was my daughters second anesthetic in her little life and whilst not pleasant it was fine, one nurse blew her bubbles and she fell asleep smiling. they really look after you in hospital so dont worry she is in the best place.

    If I can be any help at all please get in touch either via the blog or I tweet @northernmum1

    You will be fine, your daughter is beautiful and she will cope fantastically and be right as rain afterwards.

    I hope I have been some help, keep smiling, enjoy the time before surgery, swim and play on the swings a lot.

    Jane x

  5. Hey Jane thanks for linking Erin crawling, as I was reading that was the first thing I was going to do! You will get through this.

    I promise it gets easier as Jane will testify. Even this week her Lil one has come on leaps and bounds.

    Four weeks ago today Erin went into spica. She will be coming out on Monday but having further surgery in May and going back in spica. However I guess I'm local to you, Gloucs is our hospital, I chose not to go to bristol.

    Happy to meet, happy to talk, Jane and me have both gotton so much out of meeting and laughing, crying and moaning to each other – you can be in our gang!
    xxxxxx

    After the shock, which totally floored my and sees me still weeping on bad days life can carry on. xxx

  6. Hi Carolin, thank you for that. I am more scared about the anaesthetic than anything else and saying goodbye to her before they take her to theatre:-( Once that is over with we will deal with it x

  7. Thank you. My sister had the same, had hers corrected when she was one, she still has pain but is the most sporty and active one in our family. I know the time my daughter spends in the spica cast will be really hard for her and for us, but for me right now it is the operation and anaesthetic that worries me most, after that we will just deal with it. Thanks again for your words of support x

  8. Hi Jane, thanks again for getting in touch. Spent a lot of time reading through your blog last night:-) I actually feel worse about it today because I think it has really sunk in now. But, I know I will deal with it ok. Did what you suggested and joined Steps and yes, it is a really good website and very useful. Glad to be in touch with someone who is going through the same thing xx

  9. Hi Emma, thanks for getting in touch. I have had such lovely messages! I would love to meet up with you and Jane, I know it will be a hard few months so will be good to have people who know what I will be going through:-) BTW, the consultant we saw was Mr Gargon. Still v worried about DS, going to contact GP tomorrow to get him x-rayed as consultant advised us to do. Was reading your blog as well last night, it was v helpful xx

  10. Hi, I am going through the same experience as you right now. My son, 2 year old, has bilateral DDH and his surgery is schedule to Aug, 21rst. I have the exactly same fears as you just described. Could I keep in touch with you? My email is fgaleticia@gmail.com
    I hope everything is ok with your daughter and your family

  11. Hi Lea, sorry to hear you are going through the same experience as we did. Yes, please do keep in touch, my email is bishopstonmum@hotmail.co.uk and I also have a Bishopston Mum Facebook page where there are a couple other mums going through the same as you right now.

    I hope Tuesday goes okay, be warned it will be a long day and an even longer night but that will be the worst over with and then you will be on the way up.

    Do keep in touch xx

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