Suzannette's Story
By
Rochelle Romano
On August 7th, 1987, Suzannette was brought into this world and was received
with much joy and enthusiasm, being the first born daughter granddaughter
and great granddaughter. Shortly after being born, she was whisked away.
Upon the nurse’s return, without Suzie, there was a great deal of whispering
in the corner of the labor room. When asked to explain what was going on,
they only answered with, “Oh nothing to be concerned about, your daughter
has been taken to x-ray because they think that her hip might have been
dislocated during birth...happens often...it’s normal.”
About 15 minutes later the doctor comes in to tell my husband Saul and I that Suzie appears to have an under developed femur (thigh bone) Our first obvious reaction was shock, which later turned to outrage, then denial. I say outrage because I had gone to 2 different ultrasound appointments that never picked up on the remote possibility of a birth defect. If it had been detected, we would have been well prepared for it. Then denial because we thought, “Why her!, Why us?” I guess it was the way that the medical staff handled it that angered us the most.
Following that anger came the search for blame. Unfortunately, there was no one to blame. It was just what they called a “freak” incident...a congenital abnormality. An incident that we are just now discovering, is NOT so freakish.
Following Suzie’s birth, came many, many, many doctor’s appointments. Being only 17, it began to take it’s toll. I was emotionally and physically feeling the stress and pressure of trying to sort it all out. I already had a 2 year old at home to worry about and feared that I might be putting him to the side. Fortunately, We had a GREAT supporting team behind me. Backing Us all the way and We were adamant about finding a plausible solution that was acceptable to ALL of us.
Suzie was bombarded by Geneticists, Orthopedic Surgeons, Pediatricians, and the like. All interested in this little girl who was born Differently Abled.
From the time Suzie was about 9 months old, the “so-called” specialists, suggested that we consider amputation & artificial prosthesis. AT NINE MONTHS! I flat out told them...”NO WAY!” There’s just way too many changes within the medical field to make that drastic of a decision....especially at 9 months of age!
The doctors thought that just because I was 17, I would be gullible and would accept their ludicrous...”professional” solution........NOT! I’m a rebel at heart and this was UNACCEPTABLE!
Needless to say, she never went back to the doctors who were adamant for amputation. They were, in our eyes, under qualified and lacked the skill and training necessary for the task of leg lengthening.
The doctor deal was a nightmare to say the least. She was seen by specialists from Cedars-Sinai Medical Center, Orthopedic Hospital, UCLA’s Orthopedic Unit, USA’s Orthopedic Staff, Children’s Hospital of Los Angeles Orthopedic Clinic, Shriner’s Hospital of Los Angeles, Orthopedic surgeons from Canada & Spain.
Every single doctor she saw at each one of these hospitals wanted to either amputate, do the Van Ness rotation , fuse her knee & use her ankle as a knee or some other barbaric form of solving the situation at hand. Shriner’s Hospital was the only hospital that ever hinted that leg lengthening was a definite option.
Shriner’s Hospital had Suzie visit every 6 months to measure her bone growth specifically for the leg lengthening procedure.... Since age 2. The real excitement didn’t start until she was 9. Suzie was at her regular leg lengthening appointment and everything was seemingly well. We were there for the scheduling of her 1st of many operations to come. To our dismay, the following series of events greatly altered our lives and ultimately....our final decision.
During her appointment at Shriner’s, the doctor we came to know and trust, committed the ultimate of all betrayals. After so many years of preparing Suzie emotionally & physically for leg lengthening, life as we saw it came to a screeching halt. The doctor had been SWAYED by the opinions of all the other doctors that Suzie had at one time in her life, had seen. All of a sudden HE was pushing for amputation or Van Ness rotation. The excuse...... “she’s not psychologically ready for this type of procedure.” He didn’t even know Suzie on a personal level. He flat out refused to do the procedure and stated that he was “personally” against it. All of this being said in the presence of my daughter, who was so looking forward to having the procedure done. How very unprofessional and insensitive to say the least.
Needless to say Suzie started crying and at that point I told the doctor that I “personally” thought he did not have the knowledge OR the skill that was required to perform this procedure. You can only imagine how angry and offended HE was. (Like I really cared at that point). I know I deeply injured his pride and I was loving it. I then informed him that Suzie will no longer be brought to their clinic and in essence...he was FIRED by us!
As we were left the examination room and were down the hall, he literally yelled, “Mrs. Romano, I just want you to know that you no longer need to return Suzie to our hospital, there’s nothing that neither I nor the hospital can or will ever be able to do for her.” At that moment I blew it! I walked straight up to him, practically nose to nose (as he was not more that 1/2 inch taller than me) and told him, “Do you honestly think...that I would EVER even remotely consider, bringing my daughter back to an institution, that would have a “Chief of Staff” who makes assumptions about his patients, without even knowing them personally? You and Shriner’s Hospital are now and forever will be considered traders! Traders to the many children who you’ve butchered due to your fear of the lack of skill & knowledge that’s required...... N-E-V-E-R !” At that point, we walked out. But not before having the very last word, I turned around and shouted, “I would NEVER, NEVER, EVER recommend Shriner’s Hospital to ANYONE. He then sarcastically yelled back, if you are really so set on having Suzie’s leg lengthened, there’s this so called doctor in Baltimore named Dror Paley. He’ll do anything.” I made a mental note of the name and turned around to say, “And furthermore, I will be contacting the American Medical Association and the Shriner’s Board of Directors, to let them know just what kind of doctor you really are!” And then we left...never to return.
Suzie was still in tears but, I re-assured her that WE WOULD find someone who was qualified, capable & skilled enough to be able to perform this procedure.
The very next morning, a Shriner’s Hospital’s Social Worker called and left a message saying that the doctor has changed his mind and WILL do the procedure after all. I called her and told her to tell the doctor to go to hell and to NEVER call us again. She actually asked me why! I filled her in and told her that We have lost all confidence in the hospital and their staff. And hung up.
I then contacted the Maryland Institute of Leg Lengthening where Dr. Paley was located and asked if they could send us more information on the procedures they offered for lengthening. It was sent out that same day & We received it 3 days later. Needless to say, it was very informative and we began looking into possible re-location.
Then one morning, my husband was watching KTLA channel 5 here in Los Angeles and they were airing a news story about a girl that recently had her arms & legs lengthened. The newscaster, Carlos Amezcua, narrated and then flashed the name of the doctor and the clinic where the procedure was performed. Dr. Mauro Giordani at The California Center For Reconstructive Orthopedics. And it was HERE, nearby, in Pasadena. My husband was over joyed. He immediately wrote down the doctors name and called the station, he obtained his phone number and immediately called me at work. That’s when I went to work. I called the center to find out what types of insurance they accepted. Unfortunately at the time Suzie only had Medi-Cal and CCS (California Children’s Services). Medi-Cal wouldn’t pay what’s necessary to perform this type of procedure. But medical insurance was being offered at work that week, so I called to verify the waiting period for pre-existing conditions....there was none! I quickly enrolled in late September 1996, and she was activated October 1, 1996. Suzie’s 1st appointment was scheduled in November of 1996 and plans were underway.
In early June of 1997, Dr. Giordani wanted to schedule for her first operation as soon as Suzie was on summer break. Surgery was scheduled for June 25, 1997.
Everything went great on June 25th. Suzie was a little nervous but pulled through like a trooper. she was cooperative throughout it all. She was placed in a spika cast from her chest to her normal knee and kept it on for exactly 1 month. She simply amazed Dr. Giordani by not needing pain medication a week after surgery and then by demonstrating her ability to use crutches while wearing this 35 pound cast. She only weighed 47 pounds herself.
Suzie continues to astound the medical professionals that surround her. And We are VERY proud of ALL her accomplishments and are confident that everything will work out for the best. It has so far.
Rochelle can be reached at ninikita@hotmail.com