Patient Stories

Nyra’s ddh journey

My daughter nyra was diagnosed with ddh at her birth as a click in her right hip was felt. We were reffered to bc childrens hospital in vancouver. What a great team of doctors and nurses. Her ultrasound showed her right hip at 49 and left at 48 degrees. So she was put into palvik harness for 24/7 for a week and then she was switched to 23/7 allowing 1 hour for bath time. It was the one of the worst feelings seeing our princess in a pelvic harness. They took of her cute little outfit off her and she was just in a diaper for a week. But a week after she was allowed to wear a onesie that clips on but no pants. We got use to it after a week. I was told the longer i keep it on her better it is going to work. So i would only take it off for bath 3 times a week. After 4 weeks nyra had improved her hip angles to right 54 and left to 53 degrees. Doctor asked us to keep it on for another 6 weeks 23/7. We were expecting it to just come off after 6 weeks as she made such good progress in first 4 weeks. But nah, the numbers only went up to R 56/ L 55. I was confused and upset. Doctor now thinks that she had grown strong for pelvic harness, they put her into a Rhino brace. This thing looked bulky and scary. My feelings went back to the day i saw palvic harness. I cried like a baby myself. She was going to be in rhino fir another 6 weeks. I was upset, but i knew the doctors and everyone was in my daughters favour and were trying to help her. I convinced myself that better to see her in harness or brace now then see her struggling in walking for life. I did the same with brace, kept it on as long as possible. And kept my self calm while putting it on and off. If you don’t make a big deal out of it, baby won’t either. After 6 weeks, she had her xray and here comes the good news!! Her hip angles were in normal range. R 27/ L 25 ( normal under 30, different in xray and ultrasound). Now doctor recommended to leave the brace on for night time only, so that bones can harden and ddh does not reoccur. We go back after 6 months now in november. Its quite a journey but staying positive and listening to the doctors is the only advice i can give. Keep it on if asked to. I have seen videos where mothers were upset and did not keep the brace on as recommended in the end spoiled it for their babies and worsened the condition.