Ryan was born in 2016 and was a spitfire of a child since day 1. We called her the “Hulk” baby because she was (still is) so strong and hit the top of the percentile charts for her weight/height. She hit her milestones and was an overall, happy baby.
When she started walking around her 1st birthday, we noticed she had a limp. It never went away, and we mentioned it a few times to her pediatrician, but they said it was normal as she grew. We did not know anything about hip dysplasia at the time, so we didn’t push any further.
A little before her 3rd birthday in 2019, Ryan started complaining of right knee pain. The doctor told us it was growing pains, so we gave her Tylenol whenever she complained and monitored the best we could. Finally in early 2020, I pushed more, and we did blood tests for arthritis and other potential causes for her pain. They all came back negative so once again, the diagnosis was growing pains. When the pandemic started, we were limited to telehealth appointments, but we finally got to see a Nurse Practitioner in late May 2020. She was the first person who listened to us and wanted to push further. She ordered a knee x-ray, which came back normal, so she sent us to a pediatric orthopedic surgeon.
During our visit, he instantly noticed Ryan’s limp. He examined the knee x-ray and suggested we get a hip x-ray. I will remember that day forever. My husband was at home since only one parent could come, and I was fine with that because I figured the surgeon was just going to say growing pains like all the other doctors. He walked in and said, “your daughter has a dislocated right hip.” I was shocked and instantly asked how she dislocated it. He explained she was born with it, along with hip dysplasia. She had no right hip socket, and her femur did not ossify as it should have. I blacked out and was still so confused on how she was walking, running, dancing, jumping, playing, all on a dislocated hip. Of course, my husband didn’t believe much of what I had to repeat to him because it was such a shock for all of us. But the reality was, Ryan needed surgery ASAP to get this fixed.
Ryan got her first surgery scheduled quickly. She had a right hip open reduction capsulorrhaphy, femoral shortening, varus rotation osteotomy, acetabuloplasty, right hip adductor lengthening, application of spica cast with fluoroscopic guidance. She spent 6 weeks in the spica cast, then had an outpatient procedure where they did a cast change and angiogram of her hip. She spent an additional 4 weeks in a new cast. Those 10 weeks were so tough on our girl and she missed swimming and playing all summer. She got her cast off a month before her 4th birthday and we thought she was in the clear. She spent 3 months in a rhino brace at night and slowly got back to her activities, with a substantial limp, but she was happy.
Then at one of her check-ups in December (we were going every 4-6 weeks), the surgeon said her hip dislocated again and she would need surgery ASAP. She got her second surgery the week before Christmas. This second round, Ryan had a right hip open reduction and capsulorrhaphy. The doctor also removed the internal fixation device from the right proximal femur that was placed during the first surgery. She spent 7 ½ weeks in her new spica cast. Like her first procedure, she went under anesthesia to do her cast change and got an angiogram of her hip to see its progress. Her surgeon was more than happy with the hip placement and she got the cast off that day.
She went back to wearing her rhino brace at night and like round 1 in the spica cast, she got back to her normal activities pretty quickly, just with a limp. Fast forward to May 2021 and her hip was still in a subluxation position (partial dislocation); it hadn’t move in further like it should have. Her surgeon ordered a CT scan and consulted with 5 other pediatric orthopedic surgeons. They all agreed she needed a third surgery to try to move the hip closer in the socket so it had more coverage.
She went in for her 3rd surgery on 7/2/2021. For this surgery, Ryan had a right hip open reduction capsulorrhaphy, and Dega acetabuloplasty. The surgeon went in expecting 12 weeks in the cast but changed his recommendation after he got out of the OR. Ryan will be in this cast for 16 weeks and should hopefully get it off the week of 10/18/21.
This has been a whirlwind, rollercoaster of a hip dysplasia story for our little one. She turns 5 in October and has grown-up so much these past 14 months due to her surgeries, x-rays, and doctor’s visits. Her spirit is intact, but she is sad in the cast and we don’t blame her. Sadly, since her case was caught so late and was so severe, the “hip healthy” phrase hip dysplasia parents wait for may not come for Ryan. Right now, we’re focusing on getting her hip to a place of comfort for as long as possible before she needs another surgery and of course, trying to make her as happy as possible and preserve her childhood as much as we can.
After diving deep into the world of hip dysplasia, we were thrilled to see the Day of Movement event. The Day of Movement on 10/9/21 will be a day for us to celebrate her journey, with all the bad and good that has come from it. We hope people use this day to celebrate their mobility, whatever that looks like for them. We hope this day can bring awareness and funding to a cause that is still not well understood.
Ryan’s hip dysplasia journey started later than we wanted, which is why we hope to raise as much awareness as possible. Her hip journey would have been a different, less heartbreaking, story if we were adequately educated on hip dysplasia when she was an infant. We hope Ryan’s story helps others learn more about hip dysplasia and inspires anyone currently experiencing their own hip journey.