STANDING BY ANDRÉA28 February 2019 Written by By Eni Schall
Published in March 2019 Articles
A BEAUTIFUL YOUNG LIFE DETOURED BY DISEASE
Our daughter Andréa was born October 20, 2006. For the past three-and-a-half years, my husband Michael and I have been by Andréa’s side as she has fought against a debilitating disease.
The dreadful journey began August 2015 when Andréa came down with an infection in her hip. She was unable to walk so we took her to Diablo Valley Pediatric Center. The doctors in Urgent Care initially thought it was a hip infection, which turned out to be the correct diagnosis. The next day they transferred her to Oakland Children’s Hospital.
That was the beginning of a series of unfortunate events. The doctors at Children’s spent the next nine days conducting various X-Ray, MRI, Ultra-Sound, and CT-Scan procedures in order to confirm a diagnosis. Meanwhile, the infection, which turned out to be salmonella, continued to worsen and entered Andréa’s blood stream.
We were taking the first steps on a long and difficult journey. Andréa’s pediatrician, Dr. Ryan Tracy, has remained with us at every step. He is more than a fine doctor and honorary member of our family. Dr. Ryan is a good human being. He has continued to offer his professional assistance and wise advice whether day or night and whether for a lengthy examination or a short consultation,
The doctors chose to wait to begin treatment until they could identify the source of the infection, which was unfortunate because children are commonly treated for ear infections, for example, without identifying a specific bacteria.
Without treatment, Andréa began to experience agonizing pain beyond morphine’s ability to help. We spent those awful days sitting at her side, listening to the screams and sobs of our beautiful daughter, and watching as her unmitigated suffering changed her from a bright, cheerful, engaged young girl to simply trying to get through the moments and hours in a life that had become unbearable.
The infection caused serious swelling but instead of opening the wound and cleansing it, the medical staff simply drained a great amount of the fluid from her hip. Even though she continued to experience unremitting pain, Andréa was able to move around and to walk in a stumbling gait. We learned later, what we wish the doctors had known at the time, that Andréa was, in fact, developing a condition called avascular necrosis. The pressure from all that fluid had squeezed off the arteries running to Andréa’s hip, causing the blood vessels to die and thus killing the hip bone that depended upon them for nourishment and life.
When loss of blood occurs in soft tissue, death follows in hours or minutes. Bones are more stable and the condition can go for a long time with no noticeable symptoms. Nobody knew that bone material in Andréa’s hip was dying, and it would be months before they finally realized that it was dead. If they could have made the diagnosis right away, treatment could have begun immediately and the hip could have been saved. Plus, our insurance, which is covering very little of Andréa’s current advanced treatment, would have picked up the tab.
Of course, we were happy Andréa survived and were hopeful that she would improve. However, her bone degraded and a year later, on Friday, May 13, 2016, she collapsed. In an attempt to remedy the confusion and mistakes of the medical specialists, Michael spent hundreds of hours researching, consulting with specialists, reading
articles, and surfing countless websites. He set up an FTP site designed to serve as a repository for information gleaned from specialists at five different medical centers. Contributors include some of the most reputable doctors in the field.
“THE OPERATION WAS FAR FROM A CURE HOWEVER. ANDRÉA’S CHRONIC PAIN CONTINUED, CAUSING SEVERE SPINAL CURVATURE THAT REQUIRED MORE SUPPORT THAN COULD BE PROVIDED BY OFF-THE-SHELF BRACES AVAILABLE AT THE HOSPITALS.”
Unfortunately, the gathered information turned out to be not very helpful because the five specialists offered five different opinions on Andréa’s condition. The only thing they agreed on was that her situation was very bad. One Stanford surgeon offered a little hope in a procedure called Varus Derotation Osteotomy, which is for children who are suffering from various severe hip conditions. We agreed to the operation, even though the surgeon admitted that there was only a 30 percent chance of success. A stainless-steel plate was then screwed into the bone to hold it in the correct position. The surgery failed because the necrosis was so severe. Her cartilage was severely damaged and was actually missing in some areas.
The surgery actually made the problem worse. Every time she did physical exercise, the metal caused increasing pain until she would actually collapse. We knew Andréa was allergic to some fabrics and food items, so we thought she might be experiencing an allergic reaction to the stainless-steel. However, the surgeon dismissed out of hand our suggestion that the metal in the plate could be causing the problem.
However, metal sensitivity turned out to be a known phenomenon. Michael located a specialist in England who had conducted research showing that some women can develop sensitivity to nickel and titanium. The metal would actually enter their blood stream. Research showed that it happens more frequently with women than men and that women are far more sensitive.
The sensitivity could only be detected by a complicated test that Stanford, Children’s, and UCSF were unable to perform, so we had to send Andréa’s blood to a lab in Chicago. The procedure wasn’t covered by our insurance and we had to pay $500 out of pocket. The test confirmed Andréa’s sensitivity and we finally convinced the surgeon to remove the offending plate. Even though he remained skeptical, he conducted the procedure and in three weeks Andréa’s condition improved.
The operation was far from a cure however. Andréa’s chronic pain continued, causing severe spinal curvature that required more support than could be provided by off-the-shelf braces available at the hospitals. Michael found a facility in Boston making custom braces that were actually effective in keeping Andréa’s spine straight and reducing the possibility of subsequent back surgery.
Michael finally located Professor Derek McMinn, an inventor and orthopedic surgeon who lives and practices in Birmingham, England. For the next two years, McMinn coordinated with Dr. Tracy to get the necessary imaging for treating Andréa’s case. Last August we flew to Birmingham where McMinn finally met face-to-face with his patient. He was surprised to learn how serious Andréa’s condition actually was.
The hip had been severely damaged by the disease and malformed by the ineffective operations that she had undergone. Dr. McMinn took more X-rays, CT Scans, and made a 3-D printout of the hip. He assembled a team of specialists to design, fabricate and test a workable solution including a unique acetabular cup and surgical tools for a hip resurfacing surgical procedure.
McMinn’s plan holds out some hope for relieving Andréa’s pain and returning her to mobility. However, Andréa’s mental and emotional condition never improved. She continues to be worse than depressed. She’s become numb.
“You need to regain your emotions in order to live in the world,” I recently told her. “I’m not in the world.” She answered.
No child should have to pass through a dark valley like the one that Andréa is trying to navigate. It seems an especially undeserved fate for someone like her, who from birth had always been such a happy person continually living life with her whole heart. She began to play the guitar when she seven years old. Before long she added piano lessons, followed by singing lessons. She learned to play soccer, took swimming lessons, and joined the Girl Scouts as a Brownie.
Andréa was always blessed with drive and persistence, and lived life in a deliberate manner. Before she was able to walk, we would watch as she set out to accomplish some task — climb onto a large chair, for example. She would fall back, grow frustrated, but would continue until she finally reached her goal. Failure wasn’t an option.
In pre-school, Andréa firmly announced that she was determined never to have any absences from class so she could take home the coveted Perfect Attendance trophy. Andréa carried her determination to live life on purpose into all parts of her life. For example, she would set a deadline for finishing a book she was reading.
When she was six, Andréa enrolled in a martial arts program and, as with everything else in her life, threw herself into the training. She made up her mind to take first place in the final tournament and then quit martial arts. She practiced tirelessly, entered some minor competitions, and became the top-ranked competitor in her class. Even though she broke her collar bone during one of the events, following three months of recovery she was still leading on points. However, at the tournament she only came away with third place. She should have been pleased at having done so well, but she had the same attitude as the football player who announced that every season his team didn’t win the Super Bowl was a failure.
“NO CHILD SHOULD HAVE TO PASS THROUGH A DARK VALLEY LIKE THE ONE THAT ANDRÉA IS TRYING TO NAVIGATE.”
Andréa craved knowledge; she wanted to learn about the world. She was always full of questions. Simple answers never satisfied her, so she would go on to ask more questions. She always wanted to go farther than mostly knowing about a topic; she wanted to actually understand it. Andréa loved to analyze stories and explore questions, such as, “Why is the main character doing that?”
Michael deliberately invested himself in his daughter. He began vocabulary build-up exercises with her before she was three years old. If she wanted a cookie from a cupboard, for example, Michael would teach her the sentence “Please may I have a cookie from the cupboard?” When she was in first grade, her teacher said that Andréa was sometimes teaching her a new vocabulary word.
Michael is an IT professional. When Andréa was eight years old, he took her with him to a convention in San Diego so she could enroll in a class offering computer enrichment for children. She was delighted to learn how to use the more complicated features of a digital mapping program.
As Andréa grew older, we thought she might someday become a successful lawyer because she was interested in learning to debate and argue. She loved to engage in disputes about religion, government, and the law. She would watch the news and ask questions like, “Why is it okay for some people to do things other people go to jail for?” She always wanted to fix things. Her sister came home one day with a traffic ticket, leading Andréa to explore the question, “How can you fight a traffic ticket?” When her friend was crying because some bully said she was fat, Andréa immediately began trying to figure out ways to fix the situation.
Our insurance has refused to pay for some of the major expenses for Andréa’s ongoing medical treatments. For example, it will not cover McMinn’s hopeful procedure or the cost of getting Andréa to his Birmingham office.
However, costs are the least of our worries. We would spare no expense in helping Andréa get well and back to living life to her normal joyful level.
Andréa’s big sister, Rali, set up two fundraising sites in an effort to relieve some of our financial burdens. Rali believes that Brentwood residents would want to help Andréa if they only knew her story.
So now you know her story. It would be a welcome relief if some of you are willing to help.
Photos By Casey Quist