Patient Stories
Cecilia
Beginning at 32 weeks of pregnancy, Cecilia was frank breech (meaning that she her legs were straight with her ankles by her ears). We knew this meant we would need to have a c-section and were actually looking forward to the predictability of it all. Other than being breech, the pregnancy was without incident.
We arrived at the hospital on that June morning and got prepped to go into the OR. All numbed up, we waited to meet our little girl for the first time. Out she came and off she went to the warming table to get cleaned up and assessed. Her legs looked gummy and her feet were up by her ears and turned out. It looked strange but we assumed all was well.
Upon her first assessment by the hospital pediatrician, he mentioned that he felt a click and that he was able to pop make her hip pop out of socket. He mentioned the words ‘hip dysplasia’ but said we’d keep an eye on them. I googled and googled and tried to prepare myself. It didn’t sound so bad but was still a bit scary. During the following couple of pediatrician assessments while in the hospital, they mentioned that her hips were tightening nicely and that the relaxin was starting to clear her system. They had to try really hard to get that click and said that her hips might be just fine after all. So we started to relax.
At our first pediatrician appointment a few days after leaving the hospital we were told that all breech, girls (especially first born) get referred to the children’s hospital for ultrasound. Sounded totally routine so we scheduled out appointment for a few weeks later.
At 5 weeks old, off we went to get our ultrasound. Our appointment with the pediatric orthopedist was the following week. We were feeling optimistic and hopeful due to the physical exams all showing nice tight hips.
….but…our ultrasounds showed that we had severe dysplasia with full dislocation of both hips. We would have to go into a pavlik harness 24/7. During my initial research in the hospital, I had learned of the pavlik harnesses and had convinced myself it wouldn’t be all that bad. But getting the news we were going in one felt awful. No longer would I get to snuggle my soft, floppy baby. She would be in a stiff velcro rig. I held back tears as we strapped her in and I asked as many questions as I could think of. I struggled to fit her into her carseat and off we went. I spent the next week sadly saying goodbye to all the clothes we couldn’t wear because they didn’t fit over the harness. We had to relearn how to hold her and feed her.
One week later, our ultrasound showed that the harness was keeping her hips where they needed to be and we got the green light to take her harness off for up to one hour per day for baths and clothing changes. I coped by ordering pavlik specific clothing (underserved market here! Had to order from small companies in New Zealand and Australia). We soaked up our 45 minutes of post-bath snuggles a couple times each week as I basked in her wet noodle-ness.
Just like everyone told us, it got easier. It became our normal. It wasn’t a normal we liked but we knew how blessed we were that it was “just” hip dysplasia and that it could be fixed with some velcro. We didn’t go back for 5 weeks after that. We found support groups online, read as much as we could on IHDI, and talked to other parents who had dealt with this. We realized just how resilient our little girl was as she wasn’t fazed by any of it. We also realized she was much stronger than us. We struggled while she smiled away, not knowing any different. She started daycare in this time, at 7 weeks old. We struggled to trust that daycare would follow all of our hip healthy rules (spoiler alert: they did phenomenal).
At our 6 week follow up, we were told that her hips were looking really good. Her development was progressing and we were cleared to let her out of the harness for TWELVE (!) hours a day for the next 6 weeks. We were beside ourselves with joy and also terrified. Was it long enough? Would she regress? “What if’s” ran wild. Even worse, bedtime was the suggested in-harness time. That meant daycare got to enjoy our noodle baby and our time with her each evening was back in the harness. Again, she handled it like a champ. Pulling her knees up as soon as it was time to put the harness back on.
The night before our 12 week appointment, anxiety hit. What if she wasn’t ready to be out? What if they got worse? What if we haven’t done a good enough job? We were blessed with wonderful news that her hips looked great. We were allowed to remove the harness for good…for now. We are fresh into the process and are still waiting for 6 month xrays to tell us if we’re still on track. We know there is a risk that we’ll need future intervention. But we are thankful for this process. We had never heard of hip dysplasia outside of dogs. We learned a lot. Most importantly we learned how strong a baby can be and how quickly a family can bond together in difficult times.
We found great comfort in the International Hip Dysplasia Institute resources and couldn’t have been more grateful. We were able to find hip healthy practices, swaddles, and carriers through the website. We were able to learn what to expect and were validated by the stories of others. Our girl will always be a hippy baby but we know that early interventions means she might get to live a life free of long term hip pain.