- PHOTO BY STEVE E. MILLER
- NOT HIS BUSINESS : SLO County Judge E. Jeffrey Burke said he will not make a medical decision. Instead, on Dec. 11 he’ll choose which parent gets to make the medical decision.
“I’ve done some work in pediatric ethics,” Nelson told New Times. “I’ve never encountered a case quite like this before.”
Not that ethics is an exact science, but ultimately Nelson sounded utterly lost.
“I think this is a real close call,” he said. “I don’t think there’s any clearly morally obligatory way to go with it.”
He laughed over the phone, “What’s the judge gonna do, flip a coin?”
Days before that conversation, in a family-law courtroom so orderly and clean it felt sterile, a few people sat in deathly silence for 12 minutes. No one spoke, and the only breaks in the awkward vacuum were the occasional cough or the sound of a door opening somewhere else in the building.
A father, call him Bill, sat in the front row, bent forward with his eyes closed, clutching a mess of papers and a picture of his daughter. He wore an ordinary black shirt and plain, faded blue jeans, but oddly a pair of neatly polished shining black leather shoes. His attorney, soon to be former attorney, Angel Cabrera, sat on the opposite side of the room, staring straight ahead.
The room stayed silent until Judge E. Jeffrey Burke casually strolled in. After waiting through an earlier divorce hearing, Bill, Cabrera, Bill’s ex-wife (call her Sally) who is the mother of their daughter, and Sally’s attorney, Jan Ward, shuffled to take their seats. No one among them was willing to sit next to the other. Cabrera wouldn’t sit at the desk with the mother’s attorney, and he wasn’t going to sit next to Bill. So Cabrera awkwardly slumped into one of the chairs usually occupied by jurors.
The decision that day should have been simple enough: Cabrera had filed to be removed as Bill’s attorney. He told Burke their attorney-client relationship “had completely disintegrated.”
“Many times our conversations have devolved into shouting matches,” Cabrera pleaded.
And Bill had no arguments. In fact, he was just as eager to get rid of Cabrera, complaining the attorney wouldn’t meet with him and took all of his money. But while blasting his attorney, Bill kept referring to another legal battle, even if it wasn’t on the calendar that day.
“And I don’t know what to do at this time, your honor,” Bill said after listing his complaints against Cabrera. “He did this knowing the severity of the case—that a little girl could lose her foot and her leg.”
Amputate or lengthen?
“Jane” was born three months premature. While neither parent objected to the use of names for this story, New Times changed her name and those of her family members to minimize impact on her. At 9 years old, she’s caught in the middle of a tragic court battle over the fate of her foot.
Jane was born with medical complications that persisted throughout her childhood. She was born with a condition called fibular hemimelia that entails several complications—the most obvious is her right foot developed pointing straight down, and her right leg is several inches shorter than her left.
With such cases there are basically two options. The first and more traditional treatment is amputation. Compared to reconstructing and rehabilitating a leg, a procedure known as a Symes amputation is less complicated and, some physicians believe, less risky. In the Symes amputation, a surgeon removes the patient’s foot but leaves most of the heel to retain the heel pad, because the heel pad provides good support for a prosthetic limb.
About a year after Jane was born, her doctors attempted to reconstruct her foot, Bill said. Unfortunately, her first surgeon wasn’t happy with the results and recommended amputation.
But Bill and Sally decided then against amputation and went searching for options. (Bill said he promised Jane she would keep her foot, a promise that would later fuel legal battles.) They found Dr. Dror (pronounced “drawer”) Paley at Sinai Hospital in Boston. Paley since moved to Florida, where he is the director of Paley Advanced Limb Lengthening Institute at St. Mary’s Hospital.
If “limb lengthening” sounds strange, it’s because the procedure is relatively new. Limb lengthening was stumbled on, ostensibly by accident, about 50 years ago. The basic idea is that new bone will generate and fill the gap when a bone is deliberately broken and separated. Surgeons thereby can slowly extend a limb.
At first, both Jane’s parents agreed to the limb lengthening that Paley advised. In addition to operations that corrected the more crippling deformities in her foot, Jane underwent two limb-lengthening procedures by the time she was 7 years old: Paley performed the first, and the next was accomplished by Dr. Shawn Standard at Sinai Hospital. Those surgeries grew her leg by about 10 centimeters; she’ll need two more surgeries to achieve another 5 to 7 centimeters growth, according to an advisory letter Standard provided to the court.
That’s where things get tricky, because now Jane’s parents are at the tail end of nearly five years of divorce hearings. During those years, her medical conditions were only briefly addressed in court documents, usually as part of the financial aspects of various custody fights. Sally was quickly awarded physical custody of the children, leaving a few hours of supervised visitation with Bill. In fact, days after Bill filed for divorce, Sally filed and was granted a restraining order against him, which has largely framed the subsequent custody arguments.
Earlier this year, the case turned from an arguably routine family court proceeding to a quagmire that has thrown legal and medical experts together in a confusing debate no one seems able to resolve decisively.
On June 19, Bill filed an order to show cause for “medical issues.”
“He asked the court to make orders prescribing the ‘proper course of medical treatment’ for the parties’ daughter [Jane],” Judge Burke wrote in a response to Bill’s request.
A little history: After the second lengthening surgery, and multiple long trips to Baltimore for checkups and physical therapy, Sally took her daughter to Shriners Hospital for Children in Sacramento to find a second opinion and, hopefully, limb-lengthening specialists in California. There, Jane gained new doctors, most notably Dr. Debra Popejoy. When presented with Jane’s case, however, Popejoy recommended that the lengthening procedures be stopped. Instead, she wanted to move forward with a Symes amputation and fit the girl with a prosthesis.
In February, Popejoy wrote that the lengthening procedures would leave Jane too vulnerable to complications—she had scarring and infections—according to medical records. By the time the court was brought in to intervene, a panel of doctors from Shriners had decided amputation was a better option than lengthening.
“I think mom and [Jane] were very taken aback with my recommendation today,” Popejoy wrote on May 28 in medical records both parents provided to New Times.
Sally said she was surprised by the new recommendation and it was “certainly never an easy choice.” But, she went on, “I was just thinking of [Jane] and her situation.”
Due to a variety of scheduling issues, which Bill and others have blamed on his former attorney (Sally’s attorney blamed the conflict on Bill), Jane’s primary lengthening doctor, Paley, never traveled to California to counter the argument by the Shriners panel that amputation would be the better course.
Asked if he might have persuaded the court against amputation, Paley told New Times, “Absolutely. I’m the world expert in this field and they went to see someone locally in California who really is not very experienced with this. … It’s a ridiculous recommendation.”
- PHOTO CONTRIBUTED
- COMPLICATIONS FROM BIRTH : Jane (not her real name) was born with fibular hemimelia.
The item on the calendar for Nov. 23 was merely whether Cabrera should be removed as Bill’s attorney. Nothing should have been discussed about the medical decision, a point that seemed lost on Bill as he launched into a lengthy plea to Burke.
Bill insisted Sally was trying to have their daughter’s leg amputated just below the knee. Though that was one option discussed when Jane changed doctors, the prescribed treatment now is to amputate the foot, according to attorneys and doctors engaged by the mother. In fact, Burke himself confused the extent of the amputation. In his written response, he referred to “amputation at the knee,” which Ward told New Times is no longer the case.
In court, Sally sat on the opposite side of the room, pressing her palms together in front of her face as if locked in an anguished prayer while Bill pleaded with Burke.
“She’s choosing the easiest way out where she’s not burdened by it,” Bill said.
Burke is scheduled to make a decision on Dec. 11, the day following this printing, which will strongly influence how Jane will be treated. Already though, he’s made clear how he will decide. Simply put, he said in court, he has no business deciding what happens to Jane’s foot.
“My decision is not going to be whether one way or the other way is the best treatment option,” Burke said in court.
Then what will be Burke’s decision?
“I think the selection is not which choice of medical care, but who makes the decision among the two parents,” he said.
This is not the first sensational case of Burke’s career. In 2001, he threw out a case against the band Slayer. The family of murdered 15-year-old Elyse Pahler sued the band on the grounds their lyrics caused three boys to kill her.
But in this case, Burke made it clear both options—amputation or lengthening—have advantages and disadvantages. Neither option is completely outlandish, he said, so there’s no justification for the court to make a decision because Jane’s condition isn’t life threatening. Consequently, Burke will dodge making any direct medical decision. Though Burke won’t choose between the medical options, he’ll choose which parent gets to make the decision. And the option each warring parent favors is blatant.
It was an odd choice for the judge, according to Nelson from Santa Clara University.
“It looks to me like if the parents are going to continue their disagreement, that’s going to end up in the court’s lap anyway,” he said.
Bill told New Times that if Burke awards Sally the power to choose the medical path, he will appeal the decision in any way he can, which may be difficult because he drove away his last lawyer.
“I won’t let nothing stop me,” Bill said. “Whether I have to walk or crawl to get these papers served, I will do it.”
Over the life of the case, Bill has churned through three attorneys and one paralegal while Sally has kept Ward. And Bill really should have an attorney. He has a clear inability to navigate the legal system and struggles to really comprehend the decisions being made, a fact that has been brought up consistently against him.
“There are two procedures to assist her,” Ward said. “So when he says to amputate the leg, it’s just crazy talk because it’s just a part of her heel that’s going to be removed to have a prosthesis.”
Bill is still convinced it’s a full-leg amputation, and despite having little contact with his daughters anymore, he feels allowing the amputation would break his promise to Jane.
That stubbornness may come at a cost to Jane, Ward argues.
“It’s not just the easiest, it’s the best,” Ward said of the amputation. “It’s not easier, it’s the best because my client would go to the end of the Earth. ... There’s nothing she wouldn’t do for her daughter, but it’s a decision made simply and purely in [Jane’s] best interest. What is best with her.”
Each team of doctors has its own bias toward which procedure is best. Ask Paley, and he’ll unequivocally recommend to continue limb lengthening.
“Most of the time what [parents] get recommended all over the country is the amputation, but once they’ve chosen the direction,” he said, and paused. “That’s what’s so strange here is that once they’ve invested so much time and effort, they usually don’t go back.”
Paley added he’s so convinced limb lengthening is best, he’s offered to perform the remaining surgeries for free. According to Paley, the hardest part is over and the remaining surgeries are relatively simple. However, there would be extensive rehabilitation and physical therapy.
Another of Jane’s doctors, Michael Maguire, in a written report provided to New Times, said, “It is my opinion that Symes is the best option because it is a single surgery, which will allow [Jane] to enjoy the rest of her childhood.”
Then again, not even clinical studies have shown a clear best option for patients with Jane’s condition. According to one study, published in the 1999 Journal of Bone and Joint Surgery, limb lengthening is becoming more of a viable option as the technology advances, but amputation provides the easiest, safest, and best outcome.
But in another study conducted by Paley and his colleagues, they found the opposite.
“There’s absolutely nothing to justify cutting the foot off,” Paley said, referencing that study.
And in Jane’s case, Paley said, it was one of the most dire cases he’s seen, but limb lengthening still worked: “It’s almost the worst one I’ve ever done, and we have a beautiful result.”
Dr. Standard of Sinai seems to have struck the closest to a middle ground in the fight over Jane’s foot, though he still believes limb lengthening to be the better option.
In a letter to the court, Standard said, “The functional problems that the patient and the mother complain about relate more to her limb length discrepancy, which can be managed with a prosthetic lift at this time [Jane wears a special platform shoe]. Either continued limb length reconstruction or prosthetic reconstruction is a viable alternative.”
In other words, either option is equally good. Indeed, explained Dr. Paul Sponsetter, a pediatric orthopedic surgeon at Johns Hopkins University in Baltimore, when it comes to this condition and these two surgical options, there is no right answer.
“I think that at this point, what we would do would be to get a second opinion and the family would make a decision,” he said. But he offered the caveat, “When they are a family unit.”
“Realistically,” Sponsetter added, “there are probably no bad decisions here.”
But by not disentangling the medical decision from the custody battle, the fight between the two parents will conclude in an irrevocable, lifelong medical result for a 9-year girl, no matter how the judge decides.
“The judge is in a bad state there,” Nelson said. “Not only is it a close case for the parents, but again, you take it to a judge, and how is he or she going to do any it better?”
Staff Writer Colin Rigley can be reached at firstname.lastname@example.org.