A Father's Story
by Bruce Kasper
(page 1 of 4)
Who I am is not important. It's what I am that is. I'm just a father who loved his first born child with the same fervor and passion that all of us possess. Because of that love, and the tragedy that began with my daughter's birth I am compelled to tell this story of gross medical arrogance for everyone to hear, to learn from and to understand.
Anique Jacqueline Kasper was born September 23, 1980, seven weeks premature at Cedars-Sinai Medical Center in Los Angeles. Her mother, Nicole, selected Cedars because of the reputation of its neo-natal unit, even though we lived 40 minutes away in Redondo Beach. Another excellent hospital was only minutes away from our home, but Nicole wanted Cedars.
I was in Seattle on business when word reached me that Nicole was in labor. Catching the first flight to Los Angeles I arrived at Cedars about an hour after Anique was born. First, I went to see Nicole, spending time with her and learning she was alright. Then, I went to see our daughter. She was tiny; 4 pounds, 10 ounces, but God she was beautiful!
Nicole came home after three days, but Anique stayed in the neo-natal intensive care unit for three weeks. When we brought her home, Nicole's parents, Marie and Roger were there from Montreal to help us and care for their new granddaughter.
Marie was wonderful with Anique. One of 22 children, she raised Nicole and her twin brother and sister, Roger and René. In the six months they were with us, Marie often commented about Anique's physical condition. She couldn't put her finger on it, but she instinctively felt something was wrong. How right she ultimately turned out to be.
For the next seven years Anique had the usual childhood illnesses, but they lasted substantially longer than normal. However, her pediatrician could find nothing physically wrong with Anique.
On February 11, 1987, my world collapsed! It was 10 o'clock in the morning and I was in my office in downtown Los Angeles.
A physician from Cedars-Sinai called introducing himself as Dr. Tim Mundy. He said in a casual, matter-of-fact manner, that he was conducting a look-back study on neo-nates sponsored by the Centers for Disease Control (CDC). "This study," he said "has revealed that at birth your daughter was given a blood transfusion from a donor who subsequently died of AIDS."
I was stunned! How could this be? We were never informed that Anique had been transfused. We were never asked to sign consent forms for transfusions. If blood had been necessary, Nicole and I were prepared to make directed donations; to give our own blood.
Because of irreconcilable personal differences, Nicole and I separated mid-1983, and divorced two years later. I had married Mara, my present wife and love of my life, only seven months earlier, on June 29, 1986. In shock, and without pausing to gather my thoughts, I instinctively called Nicole to tell her what I had just been told.
I can still hear her screams and shrieks in my ears to this day!
That evening we met with Dr. Mundy, and a hospital social worker in a conference room at Cedars. He reiterated what he had said on the phone, expanding substantially in detail.
According to results of the study, he said the hospital had given 114 children HIV infected blood transfusions! Of that number 33, who had been contacted, agreed to be part of the CDC study. Anique could also participate if we so desired, he volunteered. I inquired what was involved. Mundy's response was very short: we could bring her back to Cedars, where she would be tested every 90 days.
That's it? What about ongoing medical care, we asked? Mundy answered quite firmly and adamantly that would be at our own expense; Cedars-Sinai would not assume any responsibility, or pay for any of Anique's continuing health care. Lastly, he warned us not to talk about or, reveal any of what we had been told to anyone. He cautioned and stressed that Anique, and we, would be ostracized.
When the shock and horror of all this finally settled in, Nicole and I put our heads together and did some research. We learned the most eminent and foremost pediatric AIDS specialist in the city was Dr. Joseph Church, head of Allergy and Immunology at Children's Hospital of Los Angeles. This was where we took Anique, and it was into his care and hands we placed her life.
Everything that we had heard about Joe proved to be true, and then some. He is a remarkable man, doing an impossible job. Imagine if you can, treating little kids with a fatal disease seven days a week, knowing that you cannot heal or cure them. The best you can do is ease their pain and suffering! Joe and his marvelous, compassionate staff are a story unto themselves.
When we could think rationally, we sought guidance and legal advice. Robert Stone, of Stone & Dollinger, was highly recommended. After obtaining Anique's birth records from Cedars, and after having a law partner who was also a physician go over them thoroughly, he informed us that there were no grounds for a negligence or malpractice lawsuit. We accepted this, and dropped the matter right there.
The next five years were my worst nightmare. I lost my father to multiple sclerosis in 1962, a slow lingering death. Now almost 30 years later for the second time in my life, I was forced to sit by helplessly, having to watch as my daughter too slowly slipped away from me. And, I was totally powerless to do anything to save her.
In early 1990, premiums for Anique's medical insurance rapidly escalated, and there was danger of losing her health coverage completely. I wrote to Sheldon King, then president of Cedars-Sinai, asking for help with Anique's medical expenses. He responded in a letter March 21, 1990, in which the hospital offered to provide free medical care for Anique, but, only for nine specific AIDS related illnesses. And, only at Cedars!
Numerous attempts to speak with King personally were futile until one morning in April 1990. On that particular day my call to King was transferred to Elaine Auerbach, Associate Vice-President for Medical Affairs: an administrative executive who had been copied on correspondence from King. It was a conversation I'll never forget.
I began by asking Elaine to "Thank Mr. King for his letter and offer of March 21. While the offer seems generous on the surface, it really doesn't go far enough." I went on. "Since this offer is only for treatment at Cedars, it precludes any hope of career advancement involving relocation, and ties me and my family to Los Angeles. Secondly, it is on the advice of her physician at Children's Hospital, that there be no change in her personal or medical environment. Lastly, since Cedars created this problem, why on earth would I want to bring her back there?"
"What is needed is full medical care for my child. As a large employer, certainly you have major medical insurance that would include pre-existing conditions. All I am asking is for you to make that insurance available to my daughter. I'll pay the premiums: I'm not looking for charity."
Her response was, "You're not an employee."
"Elaine," I said. "This is my first born child. Just put me on your payroll. I'll come in and work a second shift, a third shift. I'll be a janitor. I'll be an orderly. I'll lick bedpans clean if that's what it takes to legitimately obtain this coverage."
Her snotty, arrogant answer was, "Come in and apply like everyone else!"
I won't bother with the remainder of the conversation, but I was flabbergasted, and came very close to losing it. Instantly I knew this was totally wrong, and that something had to be done.
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