Hi there fellow Hippies! It has been a blessing to find this site and community dedicated to the education, support and fellowship for those of us, young and adults, affected by hip dysplasia. Whether as the warriors or the loved ones, we are all impacted by this diagnosis in very heavy ways.
For my (very lengthy) story, it begins as the second born female child of very young, economically challenged parents during the Vietnam War era near Dayton, Ohio. The family was a happy lot who enjoyed family, nature, animals and spending time together, watching the baby “Beaner” develop into a toddler (Beaner would be me 🙂 ). My nickname was Beaner as I was over a 9 lb baby to a very tall, thin (bean pole) mother. I was round and plump, full of spit and vinegar, and as my mother would go on to say, had I been born first, there would not have been a second child 😉
Needless to say, the Toddler Years started off with a bang! Always wanting to be on the go, chasing after my best friend/big sister. Unfortunately, at the 12 month walking milestone, my grandma told my mom and dad that my walk was not right. She was a mother to 8 and grandmother to too many to count so mom and dad trusted her assessment and took me to see the doctor. Alas, I was diagnosed with bilateral hip dysplasia and underwent closed reduction, internal fixation and placed in a Spica Cast for something like 12 months…. I can’t recall all the details 😉 I am told, however, that I was a trouble maker! Every appointment would bring about a scolding to my parents as there would be crumbs of cookies or sandwiches or other crazy items, such as toys, which I would hide down my cast for safe keeping for a late night snack or to play with after bedtime.
My parents did whatever they could to suffice me some freedom and continue to keep me active. Back then there weren’t car seats or adaptable strollers for children in Spica casts nor could my parents have afforded such luxuries. So my ingenious father improvised, overcame and adapted! He modified an army backpack to fit me and my cast so I could accompany them on hikes and walks in the parks. He adapted a Big Wheel, or something to that effect, so that I could lie on my stomach and scoot around with my arms to chase after my sister and the neighborhood kids, and get some exercise too! Finally, after a year, the cast came off and from what I understand, I was back to terrorizing the town in no time! Hips were fine and I was released to carry on without restrictions or concerns. Yet, in the back of my consciousness, something never quit felt right in my legs.
I believe it was the 4th grade when the school was running scoliosis checks. I was always the tallest or second to tallest in the classes so I was nearly last to complete the assessment. The testers have you stand in front of them, bend over to touch your toes, and the assess your spinal curvature and your pelvic bone levels. I don’t recall exactly how I was ‘notified’, however, I was told that I had scoliosis and needed to see a specialist right away… I can remember crying and standing outside of sisters’ classroom door waiting for the teacher to pull her from class so that she could console me and call mom and dad. Back into bondage (bracing) I went.
At this point, we were going into another new school in my 5th grade year. This would make the 4th new school for me. It was a private school with uniforms and ‘wealthier’ people that we did not know. I would be going in with braces on my teeth and a brace on my back/pelvis ~ Nothing to See Here People 😉
I made the best of my middle school years. I made the cheerleading squad, played (attempted to play) softball, basketball, and volleyball. Running wasn’t ever my ‘thing’ and I wasn’t the most coordinated but I really had a good time and lots of friends!
Fast forward through high school, that was a disaster of my own making…. to the College Years. Early 20s, feeling amazing, studying exercise physiotherapy and nutrition, and meeting my first love – as he performed a jujitsu move that landed me flat on the mat staring up at his handsome face 🙂 Jujitsu would end up being the Dragon that woke my DDH. Following an advanced class of sparring, throwing in some round-house kicks, i was unable to ascend the steps to make it our parking garage to go home. My now husband basically carried me to the car in fear, with me in tears.
My amazing local Orthopedist, called a family meeting. He was a friend of the family and my aunt was faculty there so we were in within a day or two. As he read the X-rays, drawing the areas of where my acetabulum should be, the loss of femoral head shape, and outlining the areas of early osteoarthritis in a 23 year old’s hips, I could see the gravity of the news on my parent’s faces. I could feel the anxiety and guilt in the air like thick smoke. The intensity of the news that the doctor wanted to refer me to Ann Arbor, Michigan for a “new” technique called a Ganz periacetabular osteotomy, with one of the only U.S. surgeons (at the time) fell on ears ringing with head-chatter. My life had just been altered in completely different path…. His words that the alternative would be a hip replacement at some point, but I was too young, and they wouldn’t last my lifetime… and exercise physiology would not be the best career pursuit, was too much. The surgery was intensive, the recovery more so and he wasn’t certain I was a candidate yet I needed to go to Ann Arbor, MI. (My husband was excited as he was a University of Michigan football fan… in a SEA of The Ohio State BUCKEYES loyal fans 🙂 )
Circa 1994 in gorgeous Ann Arbor, MI. Best deli sandwiches in that town EVER! The doctor walked in and said, yep, she’s in pain! (umm yeah…) and that I was a perfect candidate for a hip sparing rPAO. He explained the surgery (6-8 hours long!), the need to self donate 8 units of blood (O-Neg) and a week in a Detroit hospital followed by 6 weeks non-weight bearing then progression to full weight bearing….. WOW! I was able to make 7 units of self directed O neg blood donation… surviving on a multitude of recipes for disgusting liver to keep my iron load up…. Lucky for me, my daddy is O Neg and was able to direct the last pint in my name. I needed it all!
The worst part was third shift in a downtown Detroit hospital (which is no longer in existence) all alone in your 20’s and unable to do anything for yourself. I called crying for someone to be there to be my advocate… I couldn’t take another night lying in urine or without water or medications… or anyone to talk to, so my daddy came back up to stay with me! He even got them to let me out in a wheelchair for some fresh air in the daytime…. it was so special to spend that time with him!
Recovery was no joke! I shared a bedroom with my 5 year old niece at my sisters as they were in a flat apartment, and my then-husband was in Firefighter training. I don’t know how she slept with the CPM machine droning away all night long and I am sure I was insufferable as a patient, being dependent on everyone for everything. My big sister was amazing as always! Single mom taking care of her young daughter and little sister while working a full time job in the financial industry! That’s a warrior for ya’!
I went back to college. Only this time, I was going to be an RN. Based on the care I received after my PAO, I knew I wanted to be there for people who were scared and alone like I was at that time. No one should ever be in a position of fear, pain and isolation without an advocate, so I was determined to be that advocate! I was divorced, remarried, had a natural birth 8 lb 2 oz, 21″ son (now a senior in H.S. with an Air Force ROTC scholarship for College 🙂 ), divorced a second time, raising my son as single mom.
Fast forward to 2012, PAO had been AMAZING!! No pain, no real issues… Some popping, some creaks and clicks but I was UNLIMITED and unstoppable! Then, pain started setting in… limitations in sitting, walking, positioning. Went to local orthopedist specializing in hips and anterior hip replacements, knowing that was my only next option. I underwent an Anterior rTHA 2013. Amazing the difference… 24 hrs in the hospital, full weight bearing with a walker and no real restrictions. I did end up with a herniated L4-5 as I recuperated but otherwise – Trucking On! I still needed to lose the extra 40 pounds I had started to put on since the pain started… So I went on to take yoga teacher training in 2018 and continue to develop that practice and learn yoga anatomy and trauma yoga.
There is some pain in the LT groin now and on the femoral head so I had an appointment an orthopedist in Columbus, Ohio on October 3, 2019. The RT hip looks great, the Lt is only mildly dysplastic and nothing needs done at this time. I did get an SI belt… WOW, that thing is impressive and relieves the nerve pain in my left leg down to my toes! I am somewhat hyperflexible and need to work on strengthening and not flexibility – flexibility can be a bad thing in hip dysplasia, as hypermobile joints can cause joint pain and result in higher rates of subluxation, dislocations, sprains and secondary osteoarthritis. Physical Therapy, here I come 🙂
My story is one of genetics. Although I am the first diagnosed, I do not believe I am the first in the family. My father has hip pain. My sister has hip pain which was diagnosed without any xrays as over-activity/use. My paternal cousin’s second born SON has DDH and wore the Pavlik harness. My niece’s first born princess (in the images here – Willa Roselyn) has DDH and wore the Pavlik harness.
This makes me focus on if there a program that we can start in infancy to develop the musculature and surrounding joints/foundation to prevent adult onset early osteoarthritis and joint destruction utilizing a holistic approach? Researching different countries’ therapy techniques and approaches to DDH for prevention of adult onset sequelae leads me to believe that there is hope. That one day maybe we could develop a holistic program for Hippies that includes nutrition, yoga, massage, exercise, meditation, essential oil therapy/plant medicine and guided imagery.
As M&M says in one of his songs, ‘its like a tornado meets a volcano’ ~ my life has been a whirlwind. Yet, it’s all in how you look at it. I choose gratitude! I am stronger for my weaknesses and wiser for my mistakes. My current partner and I have a farm we are starting with a lot of acreage that I plan to walk, plant/harvest and work until I expire. I will continue to study this diagnosis, the approaches to management and prevention of sequelae and adult onset DDH with it’s comorbidities. I will continue to advocate for this cause, for myself, and my family, and for all of us HIPPIES out there looking for answers.
Thank you for reading my extremely lengthy journey ~
Kelli – Nurse, Farmer, Yogini and Holistic Medicine Student