Emily and Annabelle’s Story

Emily was born the youngest of her family, yet the only one with developmental dysplasia of the hip (DDH). The same holds for her daughter, Annabelle.

Emily was diagnosed at birth and was in the Pavlik harness for 6 weeks. It was not until high school sports that Emily started having hip pain. She went to her primary care doctor who did x-rays. She was told “you will just have to wait it out for a hip replacement one day. There is nothing we can do for you.”

After being told there was nothing that could be done, Emily went on with daily activities and just limited what she could and dealt with the pain as it came. She married and had 3 children.

Our 3 children were born with no complications that we knew of. Our first notice of any concern with Annabelle was during her six-month, routine well-visit with our Primary Care Physician. During the exam it was found that Annabelle would not put weight on her legs. The doctor recommended x-rays due to learning of a family history of hip dysplasia

The hip x-rays for Annabelle confirmed her diagnoses of bilateral hip dysplasia. Upon meeting with the pediatric orthopedist, we learned that, because of Annabelle’s late diagnoses, surgery was our only option for treatment.

Surgery was scheduled, but the surgical procedure was unknown prior to beginning the surgery. The treating orthopedist was unable to proceed with a Closed Reduction option for surgery, and decided to proceed with an Open Reduction procedure on the left hip. This involves an incision, opening of the hip joint itself, and directly visualizing the ball and socket. Two weeks later we returned to proceed with an open reduction procedure on the right hip. Annabelle was in a Spica cast for 9 weeks then Ilfeld Abduction Brace till she was 2 1/2 years.

After Annabelle’s 2nd surgery she developed a complication in which blood flow to her right femoral head was restricted and resulted in AVN (aseptic necrosis). The next few sets of x-rays showed irregularities in ossification in her right femoral head. Two years after her 2nd surgery the x-rays show the right femoral head is smaller in size but appears to be growing along. She continues to have shallow sockets. We will continue to be monitored by her orthopedic doctor for the foreseeable future.

As for Emily, she was recently seen by the same doctor since he also has a young adult program. We have learned that there is something else that can be done prior to a total hip replacement. Emily can get a PAO (periacetabular osteotomy) which will preserve a shallow hip joint instead of replacing it with an artificial one. In the procedure, the surgeon reorients the hip socket (acetabulum) to provide more coverage over the ball (femoral head), thereby relieving the excessive pressure around the rim of the hip socket.

The goal of PAO is to eliminate or decrease pain, restore function and maximize the functional life of the hip. After surgery and sufficient recovery, you can return to an active lifestyle which, when having three young child and only being 30 years old, is most ideal.

Instead of being mad or upset, we have decided to put a positive spin on Annabelle’s diagnosis to educate and spread awareness to other families about hip dysplasia.  We were not aware how important the role of family history is with early detection of hip dysplasia and want to help other families not make the same mistake. One way that we were able to spread awareness was with our Pediatrician’s office. At the pediatrician’s office when they have a newborn visit, they now ask parents about any family history of hip dysplasia to add as an additional screening tool.

We hope to be able to bring more awareness to people everywhere