Patient Stories

Amy and Giuliana

“What are the chances that my unborn daughter will have hip dysplasia?” Was the question I posed to my orthopedist when I was 8 months pregnant in 2011. In my entire life’s journey with Congenital Hip Dysplasia (Developmental Dyspalsia of the Hip), I never thought to ask this question up until now.

Let me rewind to February 1982 when on a cold afternoon in Connecticut a baby girl was born. I was delivered via c-section because I was in the Frank Breech position, and as soon as I was out of the womb my incredible pediatrician did a hip check and immediately heard the familiar click of dysplastic hips. My parents, who just welcomed their first (and would become only) child into the world, had never heard of (Bilateral) Congenital Hip Dysplasia. They were instructed at that point to try placing their new bundle of joy in double diapers. If any of you are familiar with this technique, it was to basically build up padding between the legs to push them outward, in similar fashion to a brace. With this not being as successful as was desired, I was then placed into a Pavlik harness. No luck. Next up…traction at 7 weeks old. With traction not working, my orthopedist then placed me in a spica cast.

Unfortunately, none of these interventions proved to be successful. All signs were now pointing to surgery. For the next few months, I was in and out of surgery, having open and closed reductions performed. It is noted in the medical records from Dr. H that from unsuccessful attempts at both the open and closed reductions avascular necrosis was present. Avascular necrosis is when blood flow to the bone is compromised. This eventually led to more complications. In October 1982, my orthopedist walked into the waiting room of the hospital with a smile on his face. My mom thought he was coming out to tell them good news; just in time for her birthday. When he got to them he told my parents that his hands were tied. When asked by my mother if I would be able to walk, his response was, “She’ll never be a ballet dancer.”

As a medical professional, how can you say that to the parents of a 9 month old that have put their trust in you to mend your child’s condition? So heartless. At this point, my original orthopedist referred my parents to a

Children’s Hospital where I began seeing a new orthopedist. I like to refer to this doctor as the doctor who wrote the book on Hip Dysplasia. In December of that same year, he performed an open reduction and inter trochanteric osteotomy to the left hip. This was the first of many operations that the doc would perform. Over the next 15+ years he would become a saving grace to my parents, the staff like family, and the hospital like a second home.

Years passed, and I continued to see the doc on a regular basis to monitor my hip. In December 1986, 2 months before my 5th birthday I underwent a left transiliac leg lengthening and a left trochanteric transfer. In layman’s terms, I was going to be cut, spliced, repositioned, and held together with pins and wire. For the next 8 plus weeks, my tiny little body would be prone in a full body cast from my chest down. It’s how I celebrated my 5th birthday. The body cast was hinged like a clam shell which allowed my mom to check the wound and change me. On April 10, 1987, I was taken back to the operating room where the pin and wire from the greater trochanter were removed. Two days post op, I was able to walk with the assistance of a walker and was discharged back to CT in time for Easter.

I would continue to be seen on a 6 month to yearly basis until 1991/92 when another surgery was proposed. Remember when I mentioned avascular necrosis? From this, it caused the left hip to not grow at the same rate as the right, and I was now left with an almost 2 1/2 inch difference between the left and the right leg. Try being an awkward 4th/5th grader with glasses, braces on your teeth, curled bangs (it was the early 90s everyone did it!), and a 2 inch lift on the outside of your shoe. It wasn’t the most flattering time in my life, and I did go through the juvenile ribbing of classmates. My favorite was being called “Frankenstein”. I came back with some sarcastic retort, which thankfully halted anymore ridicule.

The options that the doc gave my parents were a) lengthen the left leg by placing rods with screws to be turned in order to stretch the bone. This would result in awful scaring and open wounds. There was also the possibility that the left hip was not strong enough to support this procedure. Or b) cut into both sides of the right knee, turn this little plug between the joints and slow down the growth of the leg. It would leave me shorter in height than anticipated, but would cause less stress and leave me with fewer scars. My left hip already resembled a road map, so my dear parents opted for the latter. The procedure was completed in June 1993, and was successful. I went on to have only approximately a 1/2 inch difference between the two legs, but that didn’t stop me from reaching for the stars. Did I go through a self-conscious time in my early teens with my scars? You better believe it, but all of what I went through made me a stronger woman. So strong in fact that I competed in the Miss Connecticut Scholarship pageant in my early twenties, swimsuit and all, and placed in the Top 10. God may have taken away my ability to be a ballet dancer, but he gave me a sense of humor, gift of song, and optimistic attitude.
My journey with hip dysplasia is not yet over. I’m 34 years old now and on the verge of a hip replacement. Just when, I’m not sure, but it is almost a daily struggle. My range of motion is non-existent, which makes doing daily things, like sitting crisscross on the floor to play with my daughter (her story coming up), extremely challenging. The simple things most people take for granted, I long for. I never learned to ride a bike because of my length discrepancy, and I can’t run because the hip just isn’t strong enough. I’m in the prime of my life and can’t enjoy it to the fullest. But such is life, you can’t have it all!

Now, to my daughter. The response I received from my orthopedist (my case was handed over to a new and fantastic doc, also at Children’s Hospital), told me that the chances of my daughter having CHD were more than 25%. Unfortunately due to a uterine abnormality she was breech, she was also the first born girl to a mother with a familial history…all the cards were stacked against her. On November 7th, 2011, 5 weeks ahead of schedule, I welcomed my beautiful daughter Giuliana Grace to the world via c-section. At birth no click was present, but she was to go for an ultra sound at 4 weeks. I asked for a referral from my orthopedist out of BCH for one in Connecticut and was sent to the head of pediatric orthopedics at Yale. Giuliana’s ultra sound showed that she too had Dysplasia. At the time of her birth, I wasn’t aware of the dangers of swaddling, and looking back at it now, I wonder if this also contributed to her CDH.

You can imagine how I felt when I got the news. My heart broke for her. I cried…a lot. I thought about my mother and my struggle and prayed that she didn’t have to endure all I did. Now being a mother myself, I thought about how strong my mom was and how she must have felt seeing her baby go through all of this. She is the strongest woman I have ever met, and I knew that I Giuliana needed me to be strong, too. Thankfully, Giuliana was off to a much better start; she had a specialist that works exclusively with children. Unlike my first orthopedist. She was first placed in a Pavlik harness for 23 hours a day in December 2011. Thankfully, this worked for the right hip. The left hip however, like her mother, was still impaired.

Her doctor then suggested we place her in a rhino brace. The rhino brace, I would come to learn, is what another doctor referred to as a “sloppy brace”, and often times proved to be more successful than a Pavlik harness. She was placed in the rhino around January/early February 2012. Seeing her in both of these braces was extremely difficult. The guilt I felt as her mother, feeling as if it were my fault that she was in this situation was a difficult pill to swallow. Regardless of the fact that my tiny baby was in these contraptions, she was always happy! She began in the rhino brace for 23 hours a day, just like the Pavlik. When we brought her back in approximately 4-6 weeks later, an ultrasound showed that her condition was improving. The doc said we could decrease her time to 16 hours a day; then she was transitioned to only needing to wear it at night. My husband and I both were ecstatic to hear this great news. She continued to be seen and in April 2012 she came out of the brace permanently. By the grace of God, and a fantastic team, my daughter’s hip dysplasia is not detected on X-ray.

Giuliana enters Kindergarten in the fall, and is doing amazing. We’ll go back on a bi-yearly basis at least until she is done growing. I am thankful. Thankful for how well my daughter’s hips are doing. Thankful for medical advances and improvements in healthcare. Thankful that I am where I am today because of specialists I saw at Children’s Hospital. But most of all, I’m thankful to get the opportunity to share my and my daughter’s story with all of you.