Patient Stories
Gabriella’s Story
Although I prepared for my baby’s arrival for months, nothing in my prenatal visits, mother-to-be emails, or What to Expect When You’re Expecting book prepared me for having a daughter with hip dysplasia. During the routine pediatrician exam shortly after her birth, the doctor noted that Gabriella had a “slight click” in her left hip. He said he would schedule a follow-up appointment at the local radiologist’s office if the click was still present at her one week-old appointment. One week later, there was still a click.
In the two weeks that followed waiting on her ultrasound, I thought very little about her hip. The doctor previously mentioned that often the hormone Relaxin remains in the infant’s system for a brief period after birth and could be to blame for the click. My husband and I bundled her up in early March for a trip to see the radiologist. My worry was minor compared to the anxiety I felt over her being past her due date. The nurse called her name, and we went to the room where the doctor pushed and pulled on her small legs and tiny hips. Then, in a very matter of fact tone, told me my first-born daughter had bilateral congenital dysplasia of the hip (bilateral CDH). Not only was I shocked, the burning sensation of frustration, confusion, anger and disappointment simultaneously welled up inside of me. No one, not one person, in the entire gamut of medical professionals who had spoken with me in the last 8 months had even vaguely mentioned “hip dysplasia” to me. Why not? Why didn’t I know this was a possibility, but yet I am forced to confront it?
In all my fantasies of holding a perfect little baby, not one of them contained a picture of a Pavlik Harness. But at 3 weeks old, the physician’s assistant placed my daughter in one.
The diagnosis of CDH had been confirmed by the head pediatric orthopedic surgeon at the hospital; my daughter had mild dysplasia of her right hip, and moderate to severe dysplasia of her left. When she was fitted and placed in the harness, I cried uncontrollably. I was certain her diagnosis was a direct result of something I had done. After all, I was her mother. I carried her, I nourished her, I rocked her. I had not had dysplasia as an infant, and she was not born breech. Nothing made sense to me. But the reality remained that this condition can affect the children of even the best of mothers. Hip dysplasia is a problem with the formation of the hip joint occurring mostly commonly in first born girls – first born girls just like mine.
Since Gabriella had CDH, she had to wear the Pavlik Harness (which we referred to as her “bungee jumping suit” for other children who asked what it was) twenty-four hours a day, seven days a week in an effort to correct the angle of her hip and deepen her hip socket, the acetabulum. The acetabulum index, or AI, became a focal point for my husband and me. The PA wanted the AI to increase to 63°, an angle number considered in the normal or acceptable range following treatment. Our expectation was that after a few weeks of remaining in the harness, the socket would deepen, the AI would increase, and the harness would be removed.
In fact, the harness was removed and replaced with a foam Rhino brace shortly before she turned 3 months old. A Rhino brace would now allow for Gabriella to return to normal bathing, and the brace fit over her clothes instead of underneath. While it looked like she was wearing a huge foam diaper, a dress slightly larger than she needed made the brace hardly noticeable. While I didn’t mind if anyone saw the brace, I ached when others gawked at her as if she were defective. On the contrary, she was growing like a weed and never seemed to notice her brace. She smiled, cooed and played like every other baby her age. The only adjustment was learning to sleep in the Rhino instead of the harness.
The adjustments as parents were much harder than anything our daughter felt. We learned how to choose clothes that fit, to answer questions of curious strangers, to pray more often, and to find the cheapest gas stations on the 200 mile one-way trip to the doctor. We learned our way around the hospital, and visits became routine. During the bi-weekly appointments for adjustments to her harness and repeat ultrasounds, her hips appeared to progress well. While the right hip had reached normal range, her left was farther behind. The percent coverage of the femoral head increased from 25 to 50 on the left side, putting it in the normal range. However, the AI was still at 58 and needed to be 63. That initial frustration from the very first visit returned. Gabriella needed to remain in the Rhino brace as a last resort before considering surgery as a treatment option.
The surgery the doctor referred to as a possibility at her next appointment was not something we wanted to hear about. Gabriella was only 13 weeks old. The next pieces of information fell on my deaf ears as I slightly when numb. My husband explained it to me later in these basic terms. The brace appeared to no longer be working, and according to the X-ray, a psuedo-acetabellum was forming on the left side. The PA said she would give the information to the head pediatric orthopedic surgeon, but Gabriella would most likely need an open or closed reduction and a spica cast for 3 months. Due to the distance being prohibitive for a quick return visit, she said she would call us in a day or two to let us know the doctor’s decision.
The phone call was not what we had hoped for during those two days. We thought she had been progressing so well and after being in a Pavlik harness for 3 months, she should be fine. We began praying fervently and asking God to heal her, completely or through using surgery. Our meeting with the surgeon was set for June 1st, and the arthrogram followed by closed or open reduction, for June 2nd. The reduction is closed if the surgeon can maneuver the hip into the socket, and open if an incision is required at the top of the thigh to cut ligaments and then move the hip into place. We requested that the X-rays be repeated on the 1st, and then we met with another surgeon. He viewed her X-ray and said had we not told him it was the left hip, he would not have known. He continued by saying based on her physical exam, he felt no subluxation and no dislocation of the hip. Then we talked to the head surgeon. He said based on her history and X-rays alone, he was 90% certain she needed a reduction surgery and spica cast. However, after his exam, his certainty of a cast was 60%, but that neither an ultrasound nor X-ray was capable of showing the femoral head at her young age of four months. Thus, he would perform the arthrogram and if the hip was not stable, he would continue with reduction surgery so she would only be under anesthesia once. He left the room for my husband and me to discuss whether to go forward. I had complete peace about doing the procedure. I knew in my heart God had healed her.
The next morning we headed to the hospital. She stayed fast asleep until time for her procedure. We put her little surgical gown on her as we answered questions, and then I had to hand my daughter to the nurse at 10:00 a.m. for anesthesia. A tube was put down her throat, and she was put on a ventilator. Her small body had to be totally paralyzed while the surgeon injected contrast allowing a clear view of the femoral head. I must say here that the hardest thing I have ever done in my life to date is give my little girl to a nurse, trusting God that she will come back exactly the same while beating back the mental battles of the risks, the surgery, and the potential cast. The surgeon did promise that he would talk to us immediately after the arthrogram to let us know whether the hip required surgery and a cast.
A very long 40 minutes later, he came out and sat down in front of us. He simply stated, “It’s perfect. There is nothing I can or need to do for her. The hip is exactly where it should be.” Of course, I burst into tears realizing that God had given us the miracle for our daughter that we had asked of Him. We had already determined in our hearts that, in facing our giant as parents, we would praise Him if he healed her, and we would still praise Him if he healed her using surgery.
Regardless of what you believe in or do not believe in, this story is a reality for my husband, for me, but most of all, my daughter. She continued to wear the Rhino brace only at night until February 22, 2010, eleven days after her 1st birthday. However, she has been walking since she was 10 ½ months old, and nothing slows her down. She runs, jumps and plays like any child who has not had hip dysplasia. I am so thankful for the treatment she received by her pediatrician, her PA and her surgeon. Whether by harness, brace or a spica, if necessary, hip dysplasia can be treated successfully if caught early. My hope is that each of us will take part in educating the public, supporting other parents and children, and raising awareness of hip dysplasia, for the benefit of all children who will run, jump and play one day soon.
