The last step..

For all those wonderful DHH parents who have been following Hazel’s progress, my apologies for not keeping up with the blog in recent weeks. It was easy to find time to write posts when Hazel was in the spica as her restricted movement lead to a diet of ABC Kids and plenty of time for Mum to hop online. Since she has been out of the plaster however, I’ve really wanted to take advantage of her good health and freedom to get out and about.

Hazel is walking very well now. I want to say fluently, which seems an odd word to apply to movement and not speech but her ‘toddle’ is quickly disappearing and her limp, which would have surely alerted us to problem if I had not otherwise developed suspicions, is completely gone.

This is Hazel’s hip in the x-ray that started it all. I remember picking it up from reception and sneaking a peak whilst waiting for my doctors appointment. The accompanying radiologist comments noted the complete hip dislocation and underdeveloped femoral head but I didn’t need them. I really can’t describe the sick and sinking feeling that hit me the moment I saw this picture.

 

You can see that her right leg (which is on the left of this picture), is a normal hip with the femoral head in its socket and all is well. The left leg unfortunately has abandoned its usually place of rest and gone for a little wander about. When I tell people that Hazel’s leg was dislocated, they wince and ask if that didn’t hurt her? Looking at the x-ray, you’d certainly think it would, but Hazel certainly never gave any indication that she was bothered and happily walked and even ran with a limp. Of course hindsight is 20-20 and I can see many thing in the past that indicated not so much pain, but a definite reluctance or difficulty with her left leg, but never enough to get us thinking.

Of the whole experience, I would say that only the first 48 hours following her surgery were worse in terms of emotional turmoil during Hazel’s treatment. The period between discovering her DDH and actually knowing what was going to be done about it was very difficult because you imagine the very worst. Years and years of surgery and wheelchairs and braces and complications from surgery and scars and death. You try to focus on the positive but it is hard not to give way to despair. It is funny to think that having a conversation with a surgeon in which he tells you he is going to chop out part of your daughter’s hip bone and shove it into another place, before wrapping her in plaster from toe tip to sternum could be a relief but it was. Known strife is just so much easier for me to bear.

Those of you who have followed my blog know what comes next. Some of it was incredibly difficult but most of it wasn’t really so hard at all. Hazel is walking now and as crazy as it sounds, I’m finding it hard to remember there was a time when she didn’t walk. She walks, she dances, she swims and you can see she is starting to think about running.

So I felt very different yesterday when I took her for her follow up with Gary Natrass. Nothing has given me the idea that she isn’t 100% but I was looking forward to her new x-ray and seeing her new hip for the first time. So with no further ado, here she is (before and after):

 

Just like the first x-ray, I don’t think you need to be a radiologist to see that things are better here. Gary Natrass was pleased to see her happily walking about his room and said that her progress is better than would usually be expected at this point. He said that she has  good movement in her hip, and that other children often still have very stiff hips at this time after surgery. I don’t think it is in the nature of a surgeon to be effusive, but I left the appointment feeling as though we had really won the DDH lottery. I’ve made a number of DDH friends during my experience and I can say that certainly within the number I encountered, such a short treatment time is uncommon. As we chose the more invasive and risky option of surgery for Hazel, rather than the reduction only, it also feels good to know that our choice was a good one for her.

There is one final thing I wanted to mention because I know DDH parents read this blog and I feel like it is probably something many of us feel, particularly those with a late diagnosis. A good part of my despair when Hazel was diagnosed was guilt and shame over my failure to have the DDH identified earlier. I was truly terrified that the surgeon would berate me for not realising for 18 months that my daughter’s leg wasn’t in her hip. I mean, look at the x-rays! How does a loving parent miss that? On top of that, I hadn’t taken Hazel for the maternal health clinic checks after her newborn days as I just found them frustrating and unhelpful. I didn’t think anything of her not liking to bear weight like her brother, or crawling with an odd gait.

If your child is diagnosed late, I’m guessing you will probably suffer the ‘what ifs’ as I did, and if you are all I can say is that they ease as you move through the treatment and are able to focus on ‘what is’, and what you are doing to move forward. The feeling is very isolating because, as with all shame, you don’t exactly feel like proclaiming your failure to all who draw near. It has been around 4 months since Hazel’s diagnosis and I can only now share these feelings here. If you care enough about your child even to feel guilt over a failure to pick up a problem, then rest assured you are a very good parent indeed.

Thank you so much to everyone who has offered support, and also to those who have just stopped by to read the blog. It is really comforting just to feel like someone is listening.