Yesterday I shared Krisztina’s experience of DDH and today I have another mum telling their story of late diagnosis. We have our yearly x-ray coming up in 10 days time. Already it is bubbling up inside me and I fear the outcome. That’s the thing with ddh it never leaves you. Especially when you are told that you are not in the all clear. I have been told that Erin will need more treatment – it is just a matter of when. It may not be during her childhood, we may make it to her teens, or fingers crossed her 20’s but she is likely to need a hip replacement by that time. All because she was left to try and move on a dislocated hip for the best part of two years and no health professional noticed despite countless gp and hospital visits. Charlie’s story illustrates that the implications of late diagnosis means a long term plan is needed and that the hip is very fragile.
Here is Lindsay’s story about Charlie.
Charlie was diagnosed unexpectedly with hip dysplasia at a routine 18 month doctor’s appointment. The only indicator was that he was still toddling from side to side even though he had already been walking for a couple months. As a precaution our pediatrician sent us for x-rays and then sent us to an orthopedic specialist. It came as quite a shock to us to find out that both his hips had likely been dislocated from birth, but because they were both dislocated, standard checks make it very hard to detect.
Other than being first born, Charlie had no risk factors for hip dysplasia. He walked a little later than average, but still within the well range of normal and otherwise hit all of his milestones on time. 18 months of age is a fairly late diagnosis for hip dysplasia and left him not only with dislocated hips, but very underdeveloped and shallow sockets. As a result our surgeon recommended an open reduction to place the hips in the sockets and a pelvic osteotomy to deepen his hip sockets. Since they would need to perform the surgery on both sides, another surgeon also assisted and the surgery ended up being about 5 hours.
The surgery went very well and Charlie did not even require a blood transfusion. He was in quite a bit of pain, but the hospital was great and responded quickly to adjust his pain medication as needed. During the recovery period of 8 weeks Charlie’s hips and legs were casted to his toes with just an opening to stuff a diaper in. He needed pain killers for about the first 2 weeks and it was probably a full 3 weeks before he was back to his complete happy, silly self. There were still a lot of times during his recovery when he would see kids his age and desperately want to play with them and would become upset that he couldn’t run around and play anymore.
As a mom, it completely breaks your heart to see your kids want something completely normal like that and not be able to give it to them. About 3 weeks post-op Charlie had a follow-up x-ray that showed that his left hip wasn’t sitting as deep in the socket as it needed to be. So we went in for a cast change to try to get the hip in a better position. At 8 weeks Charlie’s cast came off, but the x-rays showed that his left hip was still not as stable as it needed to be and if left alone that joint would probably begin to break down at some point in his teens causing him arthritis. So, we are headed back to surgery again in a month or less and will again be in a cast for 6 weeks, followed by a brace for several more weeks.
This experience has been very trying for me as a mother, but Charlie has been amazing. He is so resilient and adapted so well and almost always had a smile on his face. We will get through this tough time, and he will be better because of it, but I do really miss chasing my ornery, energetic toddler around.
