Patient Stories

Deb’s Story

I was born October 21, 1949 to Dave and Thelma Moreen. My father, just out of the Navy, and my mother, a 20 year old model, were living in an apartment in central Detroit. Dad was attending University of Detroit School of Law on the GI Bill. Mom stayed home with their new baby, Deborah. That’s me.

At about 9 months of age, I am told that I began to walk, only to be commented upon by Uncle Colin that I “walked like a sailor.” Mom and Dad had to agree. Something was wrong with their baby.

Without a penny to spare, my young parents could not afford to bring me to a costly doctor so Mom found that she could take me to Children’s Hospital  For 1 day every 6 weeks, Dr. W, a renowned physician specializing in Diseases and Injuries of the Spine and Extremities, donated his time for families like ours. Mom scheduled an appointment and, after 6 weeks, my parents and I met Dr. W for the first time. After being X-rayed, I was diagnosed as having Bilateral Congenital Hip Dysplasia. This could have been caused because I was born breach as, I am told, the doctors literally pulled my legs out first. (I was the first of 5 children born to Dave and Thelma and the only baby to have this condition. However, my only daughter, Molly, was born with Congenital Hip Dysplasia on the right side. That is another story which I will save for another time.)

Dr. W told my parents about the “Shriners Hospital for Crippled Children.” The goal of this hospital was to treat orthopedic injuries, diseases, and birth defects in children without charge. My parents met with the local representative and they encouraged my parents to leave me at their hospital for one year and they would treat me without cost to my family.  The only problem was that the Shriner’s Hospital was in Chicago, Illinois and Mom and Dad would not be able to visit because of the distance involved. Although the price was right, that was not an option as my Mother would not even consider being away from her baby for any amount of time. There had to be another way.

We returned to Children’s Hospital, which was a teaching hospital. Dr. W had an idea. It was 1951 and there was something new being done for babies like me. No longer were children having their hips fused and spending the rest of their lives with braces. Dr. W manually “set” my hips and put me in a full body spica cast.  Mom says I was anesthetized for the procedure. Even though I was so young, I remember the procedure when the cast was being applied. (I must have “come to” during that time.) I can still see (from my lying down position) a huge metal bowl painted white with a red trim containing a liquid in it and the long bandages being dipped in it. I watched the nurses helping the doctor wrap the wet cloth around my body. I was very much aware of NOT having my parents with me. I relive that feeling of being wheeled down the hospital hall on a gurney – watching the mint green walls go by, staring at that ugly ceiling. I can still smell that medicinal, antiseptic “hospital” smell. I was scared.

Mom says that shortly afterwards she was approached by an intern who was assisting in the procedure, (one of many medical students at Children’s). He took my parents aside and gave them some good advice. He said NOT to treat me as handicapped, but to let me crawl around and drag my casted body. If some of the cast wore out as a result, go buy some bandages at the drug store and reapply them herself. It was imperative that I not consider myself limited in any way. (My father relates that years later he met a family who had a child with the same condition. They did NOT give her free reign but rather, kept her in a swing. This person never exhibited any mobility nor thought of herself as anything but an invalid.) Dad says that they were told that I probably would never dance and would be wheel chair bound by the time I reached 45 years of age.

My childhood was normal. I ran, rode my bike, roller skated, and played as any young Michigan girl. Soon, I had 3 sisters and a brother…none of which had Congenital Hip Dysplasia. It wasn’t until I was 12 years old, in the 7th grade, when puberty kicked in. My hips were changing and I began experiencing pain when I engaged in any kind of sport or, even, walking more than a couple blocks.  At that time, my parents were living in Fowler, Indiana. Dad contacted Dr. W, who was still working in Michigan.

We drove to met with Dr. W. He remembered me and gave me a physical exam, took some X-rays and advised my parents to continue to let me grow. However, he suggested I NOT participate in Physical Education classes in the future. I am attaching the correspondence from that visit, where Dr. W says “if she learns to live within her own limit of activity that she can expect to live a normal life until probably in her late fifties or possibly her sixties.”

This is what happened after that.

These hips were done in Monterey, California at Community Hospital of the Monterey Peninsula. At the time, glue was being used. I remember the surgery as being many hours long, with medical staff dressed in something resembling hazmat suits. I was in the hospital 10 days. I could put weight on them immediately.

After the surgery, I was in need of a blood transfusion. This was the beginning of the AIDS crisis in America and I actually had to go back to the hospital at a later time to be tested for AIDS. It was all very secretive. I was given a number to use to book my appointment in their lab. My name was never used and was always referred to by that number. They notified me by phone as to the results. I was fine.

In 1993, these hips failed…first the right hip and then the left. I could tell because when I walked it felt like my transmission was slipping out of gear. That’s the only way to describe it. Then, it began to be painful. We lived in Tequesta, Florida at the time, and my surgeries were done (a year apart again) in Boynton Beach at Bethesda Hospital. It was my understanding that the glue had failed and had begun to destroy the existing bone. My socket had to be scraped out in order to insert a complete new prosthesis. My first set had lasted 11 years.

In 2007 I underwent Spinal fusion S-1 to L-3. This was necessary because my poor back took the brunt of my shallow hip sockets for the duration of my life and carried me through weight-gaining pregnancies. Eventually, it was just bone on bone. No problems with that now.

My 5th hip replacement/revision was done in October of 2012 and I am anticipating the other failed hip to be revised next spring. I scheduled appointments with two orthopedic surgeons rea that were available under my Kaiser Insurance plan.  Both surgeons balked at doing my “revision of a revision” because it would be unique and require special technique and a flange implant.  They referred me to an orthopedic specialist in Denver, a Dr. H. Dr. H’s business card touts that he is Board Certified as a physician who specializes in “Limb Preservation/Orthopedic Oncology/Complex Joint Problems.” (This was good news for me, with the added benefit that he treats people who have had cancer.  I have been a breast cancer survivor since 2011, undergoing bi-lateral mastectomies.)

Let me say one thing about Kaiser Insurance. Per their instructions, I saw two orthopedic surgeons in my “network,” each recommending the same group. This doctor is not only out of my network, but does not accept Kaiser Insurance. After a phone call to Kaiser, and supplying the necessary referrals, Kaiser agreed to pay 100% of my surgical costs for my upcoming surgery. I was scheduled to be admitted two weeks later.

In October 2012, I underwent hip surgery with Dr. H. I could not put full weight on that hip for a month, as the flange implanted needed to bond with my bones. I was told to imagine the flange as having like a “honey comb” surface that would meld with my hip socket.

Dr. H’s office works closely with The Limb Preservation Foundation, a non-profit 501c3, founded by Ross Wilkins, M.D., one of the original physicians in the office where Dr. H sees patients. This worthy enterprise’s goal is “to enhance the quality of life for those individuals facing limb-threatening conditions due to trauma, tumor or infection through research, patient assistance and educational programs.” Patients are treated free of charge with the highest degree of care. I cannot say enough good things about this Foundation. I cannot say enough good things about this worthy group of physicians.

As of this date, I am doing very well. I will celebrate my 64th birthday soon. My daughter and I have opened a retail chocolate truffle shop in Historic Monument, Colorado. 1492 Chocolates is my latest re-invention of my life. I am pain free and walk without a limp. I can’t help but feel like an imposter “normal” woman. No casual acquaintance would know what I have experienced in and out of hospitals my entire life.  I thank God daily for the life I am leading and am thankful that babies born today with congenital hip dysplasia do NOT have to endure the spica casts and the life-long multiple surgeries. The non-profit International Hip Dysplasia Institute, (IHDI) could just be the answer to changing lives forever. Supported by the Git-R-Done Foundation and the Arnold Palmer Medical Center Foundation, in Orlando, Florida, the swaddling techniques, the Pavlik Harness, the support of the physicians in educating families gives us all hope for a better, healthier future.