Mar 19, 2019 / Hip Disorders
Share Your Story: Andi's Life Changing Journey
Blog written by Andi's mom, Tera, of McComb, Mississippi.
Andi’s life changing journey started the moment she was born. At birth, we were told something was severely wrong with her hips and we would need to double diaper her, to keep her hips spread apart. Nobody actually went into details with us until later at our post-delivery follow up when Andi was 3 days old. At that time, our pediatrician told us he had never heard or felt a clunk in hips the way Andi’s hips were reacting to the hip check. Our pediatrician told us he thought she had hip dysplasia and we would need to follow up with an orthopedic doctor.
We were initially referred to Children’s Hospital of New Orleans and Andi was just 1 week old when we had our first appointment with the orthopedic doctor. She was officially diagnosed with bilateral hip dysplasia and was put into a Pavlik harness, which was to be worn 24/7 for three months. We did harness adjustments every couple of weeks and after three months, the X-rays showed that the left hip responded to treatment, but the right hip did not. Our doctor, at the time, decided to try the Rhino abduction brace. It was then that we noticed that Andi was in a lot of pain. Hip dysplasia is generally not painful, but for her it was very painful.
When you touched her right leg or made any hip movement, her entire spine curved like a ‘C’ and she screamed in pain. She had X-rays done on her spine, but this did not give us any answers. We were told her spinal curvature (32 degrees) was not severe enough to be true scoliosis.
My husband and I began to research our options and that is when we found Texas Scottish Rite Hospital for Children. We live eight hours away and did not even hesitate about travelling to Dallas for a second opinion. The appointment process was quick, easy and we were able to get something scheduled right away.
Our first appointment was wonderful.Andi had Dr. Ramo and the staff scratching their heads, but they never gave up on her. They saw how much pain she was in and were able to pick up on developmental delays that nobody else had mentioned before. X-rays showed her right hip was still out of socket, her spinal curvature was now 42 degrees and the pain she was experiencing was being caused by inflammation.
Dr. Ramo suggested we allow Andi to continue to grow and develop and the plan was to repeat her scans in a couple of months. Time passed and we then made another trip to Dallas. Her scans showed that her spinal curvature had since progressed to 54 degrees and Dr.Ramo decided to focus on her spine before we continued with further hip treatment. She was then placed in a Mehta cast – this process was rather simple, and the hospital staff made it easy.
From the moment we walked in the doors of the hospital to when we were discharged, our family felt comfortable, safe, loved and we knew our daughter was receiving the best care possible.
Fast forward a year later and Andi’s last Mehta cast was removed. Her spinal curvature had improved to 28 degrees and we were over joyed. She continues with nighttime bracing for a few months and then decided it was time to fix her hip.
Andi underwent a pelvic Osteomoy of the right hip and was placed in a unique spica/Mehta combination cast. She was in the combo cast for 13 weeks and at the end of this treatment, her hip looked wonderful! She did lose a little correction in her spine, but Dr. Ramo knew this would improve once she was able to wear a brace. She wore a rhino abduction brace for a month and then we continued with nighttime bracing.
Andi has been such a trooper throughout this entire process. For her, this is her normal nighttime routine – take a bath and then put on her brace. We had a follow-up appointment in December 2018 and her spinal curvature is now just 16 degrees. We will continue with her nighttime brace until our follow-up this summer and hopefully then, she will become an observation patient.
Everyone at Scottish Rite Hospital - from the registration staff, to the volunteers, nurse Marviel, Dr. Ramo and the cafeteria staff – they are all amazing. So kind, helpful, caring and welcoming! All of the hospital volunteers are always so giving and constantly put smiles on people's faces.
This hospital made our struggles bearable.
Additional information on Developmental Dysplasia of the Hip