I seem to have been burying my head in the sand a little or just ignoring the future. My sweet Erin is due her hip x-rays and this seems to come around so quickly each year but also jumps up and shouts boo at us when we want to stay cocooned in our bubble. Last time the news was good, there was bone growth, the femur head was reshaping itself and the blood supply looked reliable. I shouldn’t be too worried. We have done the hard part, the big surgeries that took 6 hours, the 24 weeks in a spica cast, the bone grafts, the rehabilitation.
Her xrays always happen around the same time diagnosis took place and those memories still wind me. I guess it hurts so much because she was so old at diagnosis, I still can’t get my head around the fact that all the medical people missed that she had a dislocated hip. An almost two year old and yet she was so failed. So let down. I wish I knew then what I know now, why had I not heard of ddh? why did I not push harder? Why did I not demand answers to her refusal to weight bear? Why did I let that health visitor tell me that she was being monitored, when she wasn’t?
Each year we are one step away from the hell we went through when she was two, but are we one step closer to needing a hip replacement? Her future is a little unknown, I have always been told that she is likely to need more surgery and that combined with her hypermobility makes me nervous.
In an average week Erin’s joints clunk and click and she will yelp ouch my ‘hip’ ‘ankle’ ‘wrist’ has just moved. I can hear her joints moving and the shock in her face leaves you with no other proof needed. She will tell me that things have moved and most of the time I just accept that is how she is made. I know that is is probably ligaments rather than bone. Yet when it gets to this time of year I freak a bit. What if her hip has moved, sublaxed or dislocated? Would she know? Would I know? After all I missed it once, I am hardly reliable and that thought terrifies me.
A parents job is know their child and at the end of the day I don’t trust myself or the medics that tell me she is fine now. We all got it wrong before. The only truth is that grainy black and white image that I see on a computer screen. What if what if reverberates in my thoughts. I can’t trust. I just can’t. So whilst I know the odds the are stacked in her favour at this point the seed has been sown that late diagnosis means more surgery in the future.
I have moved this appointment twice, once when I was away and the second time when it was her end of year school trip. It means the appointment is next week. Eight more days. Eight sleeps of me stressing and making up sceanarios in my head. Eight nights of imagining the worst. She will probably be fine
Probably.
Hopefully.
4 Responses
Be strong Emma, think positive and hopefully your fears won’t be confirmed. There’s nothing more heartbreaking than seeing your children in pain, I truly hope it goes ok X
We continue to watch Erin’s progress with interest. She has blossomed into a lovely little girl with that cheeky smile intact. She knows that you have always done your best & will continue to do so- trust her judgement!
Marion & Bob Kuvrs (formerly Cover My Cast)
I hope it all goes well.
One of my daughters was in a Pavlik harness as a baby and it was very worrying, but luckily picked up and corrected while she was still young. Please don’t feel bad, it wasn’t your fault, you weren’t to know and you’ve done everything possible since then.
I don’t know if it’s worth mentioning that I have a son with hypermobility issues and as a toddler / small child, he used to constantly trip and fall because he wasn’t getting enough feedback when he was moving due to the lax ligaments and joints, however he is 11 now and although he is still hypermobile and very bendy, he has strengthened up a lot naturally as he’s got older and he doesn’t fall anywhere near as much any more. They did tell me that it could improve as he got older and stronger. I don’t know if it might be the same with your daughter, but I wish her all the best. I think you probably would know if there was an issue with a joint out of place, because now you are more aware of it and would notice something unusal. Before my son got his diagnosis he dislocated his elbow right out of place and he was obviously in pain and not moving his arm right, I think you would probably know if something was wrong, also the older she gets, the more likely she will be able to tell you if something is wrong. All the best and you are doing a great job.
My sister was recently diagnosed… with DDH .. a very late diagnosis at 10 years of age… and this is the most painful thing for me… that all doctors… missed this… until i myself read about it as a medical student and examined her and took her for x ray…. It kills me… Every day since then … I cant focus on anything else. Her every smile matters to me.. and I fear the day if she feel the pain…She was operated and I promised her that after 3 months of spica cast and this bed rest she will be back to school her friends… and then soon after removal of spica cast her happiest day we found redislocation and now she again is going to go for surgery..and now i am broken… i dont know what to hope for which surgeon to trust… how to bring her back to her happy life of school friends … I am praying that may this surgery fix her this joint atleast for 10 years so she bcm doctor herself… find a meaning of life… derive comfort by knowing her pain is not the worse one. I have lost my sleep.. and cant control my tears at night .. I pray not to live to day whr she feel any pain, i want to spend every day of life fixing the guilt i have of her late diagnosis…