As the beneficiary of an innovative cleft-palate team at Seattle Children’s Hospital, I’m always interested in the progress being made regarding cleft palate surgeries. The innovation in my day was approaching the birth defect as a team effort from the minute a baby is born. Heretofore, most doctors did cleft palate surgeries without the input of dentists, orthodontists, speech therapists, and others involved in the decade-long treatment of the defect.
[Contested Cleft Palate surgeries]
I must say Seattle Children’s team approach delivered for me and for the limited number of other kids I met during my return visits there until I was 8 yrs. old. What ProPublica* uncovered in this first of three parts that I’m reprinting here is unsettling. (I’ve added subheads.)
Interestingly, it was penned by Megan Rose a crim justice reporter who’s right down my alley. I’ve recently published a true-crime book, Privileged Killers, and republished Cleft Heart, which details my various surgeries and the kind of life I’ve led since them.
‘A Utah Cleft Palate Team Says Its Approach Is Innovative. Others See a Pattern of Unnecessary Surgeries on Children.
Returning to his home state of Utah, where more babies are born with cleft lip and palate than is typical, Dr. Devan Griner made plans to open his own practice, joining the small cohort of plastic surgeons nationwide who treat the condition.
As he recruited doctors to fill out a team in 2017, Griner had lunch with an orthodontist who’d long worked in the state. He quizzed Griner on his credentials and then turned to bone grafting, a common procedure for cleft patients, who are often missing a piece of their upper jaw. Sitting back, the doctor looked hard at Griner and lobbed a test question: At what age would Griner do bone grafts on patients?
It was a surprising question. There is broad consensus nationwide to time bone grafts to when a patient is getting certain adult teeth, and so Griner, a bit taken aback, replied that of course he does it then. That’s when Griner said the orthodontist relaxed, leaned in over their Neapolitan pizza and declared, “We have a bone grafting problem here in Utah.”
Dr. Devan Griner, a plastic
surgeon at CCI, Provo, Utah
[Dr. Griner’s Encounter with Patients who’ve had Contested Cleft Palate Surgeries]
Almost immediately Griner encountered it for himself. [He’s at the Cleft and Craniofacial Institute of Utah in Provo.] Patients began turning up who’d had treatment that departed from the standard of care in ways Griner found alarming. In many cases, he felt they’d had, or been advised to undergo, grueling, and possibly unnecessary, facial surgeries earlier than his profession advised. And they were all treated at Primary Children’s Hospital in Salt Lake City.
As more former Primary Children’s patients sought out Griner’s team, the doctors started to question among themselves, and then with other cleft doctors in the state, whether they needed to do something. It’s a rare and risky move to call out a fellow doctor’s work, much less a team at a well-known hospital. Most children born with a cleft in the five-state region around Utah are treated at Primary Children’s, some traveling the farthest distance for care in the nation. It’s the largest pediatric hospital in the area, and for many, it had been the only choice.
A crucial question emerged: Did the hospital’s patients, and their anxious parents, know that the care they were getting at Primary Children’s was different from what cleft surgeons at top hospitals around the country provided?
[Innovation and Honesty with Patient Families]
The question hit at the heart of a common tension in medicine between the sort of innovation that drives life-enhancing advances and the accepted standard of care, which is informed by peer-reviewed medical studies, broad agreement among specialists and insurance company policies. What information are patients, especially children, owed? And how should regulators respond when doctors want to try something new — especially when doctors, and their choices, may be geographically or otherwise isolated from their peers?
In the case of cleft lip and palate, the future of children’s faces are on the line. The success of some cleft procedures isn’t fully known until a child has finished growing. Although there can be signs along the way, not until cleft patients are almost adults will doctors be able to fully assess if a certain treatment done at 2 years old was ultimately beneficial or harmful.
Griner’s team and other doctors who’d worked in Utah eventually felt they had to take collective action. A group of nine doctors decided to file a formal complaint with the state, saying “this is about protecting children.” Among their allegations: Some doctors on the hospital’s cleft team were performing bone grafts on patients who were too young — around age 2 — and using an off-label, controversial bone growth product that many doctors shun.
[The Halo Device Employed in Jaw Grafts]
They were performing intensive jaw surgeries — which require children to wear a large metal device [called a Halo] screwed into their heads for months — so early that they risked some children needing to repeat the operation. And the team was performing surgeries some patients didn’t need.
“They just over, over-operate,” said Lisa Morris, one of the cleft doctors on the state complaint.
Halo device in Contested Cleft Palate Surgeries
Seattle Children’s Hospital Weighs In, along with Other Organizations]
Cleft specialists at seven large pediatric institutions around the country, including Seattle Children’s Hospital and Nationwide Children’s Hospital, told ProPublica that the way doctors performed several procedures sharply departed from their speciality’s most common practices.
Utah’s Division of Professional Licensing is investigating the practices of several doctors on Primary’s cleft team, which is staffed by University of Utah doctors. The state agency originally closed the complaint with little investigation, but after an appeal to the head of Utah’s commerce department, which oversees licensing, the division reopened it in April.
[Primary Children’s Hospital Reacts]
Dr. Dana Johns, director of Primary Children’s cleft team, said the fact that her team’s practices don’t align with those of her colleagues in the field “doesn’t mean that different is wrong.” She said that intervening earlier helps protect children with visible facial differences from a gamut of bullying in their formative teen years.
In interviews, both Primary Children’s and the University of Utah told ProPublica they stand by their protocol and fully inform their patients during appointments about how and why their care differs. What the team does is “clinically defensible and potentially advantageous,” Kathy Wilets, a University of Utah Health spokesperson, wrote in a statement.
But ProPublica’s questions, the hospital said, prompted the hiring of two independent cleft surgeons to formally review the protocol. Bioethicists have also reviewed the hospital’s informed consent procedures, leading administrators to make changes to its cleft consent policies and consider hospital-wide changes.
Dr. Jay Agarwal, the hospital’s chief of plastic surgery, said the cleft team believes the standard methods of treating cleft lip and palate aren’t good enough and is trying to advance care by fixing children’s mouths at younger ages and in ways that could eliminate the need for surgery when they’re older.
“We always have to try to do better,” he said.
[Parents React]
But parents of some of Primary Children’s patients say their children were unwitting participants in what the hospital calls innovation and what some other cleft experts deemed a potentially risky deviation from evidence-based treatment. Experts said bone grafts done at such an early age could stunt facial growth, resulting in the upper lip looking pushed back and impairing basic tasks such as talking and chewing.
The final results of the early bone grafting won’t be known for years. Patients treated under the new bone-grafting protocol Primary Children’s started around 2017 won’t start seeing full outcomes until around 2029.
Gavin Rogers, 7 with his mom, Emily. HYoon
Emily Rogers [from Farmington, Utah] still feels the burden of remorse six years after her son’s bone graft when he was 21 months old. She, like members of several families ProPublica spoke with, said the former head of the program didn’t tell her that bone grafting at that age was unusual, that the hospital was just starting to try it, or that doctors weren’t sure how her son’s face would grow after the procedure.
“It’s sickening to find out later you put your kids in their hands and they lied to you, basically,” she said. “That’s what it feels like: It was a lie.”’
What’re your thoughts?
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Besides my books noted above, you might look into The Titanium Rib by a friend of mine Alain Gunn. He’s the author of a true story about two dedicated surgeons who invent a surgical implant that saves the lives of small children who would otherwise die of slow suffocation due to a chest-deformity birth defect. Their 17 year struggle to obtain FDA approval of the implant leads to changes in concept that revolutionize the treatment of young children with spinal deformities.
- ProPublica is a nonprofit newsroom that investigates abuses of power, and the author of this article is among three ProPublica investigators who’ve won a journalism Pulitzer Prize.
My latest book, PRIVILEGED KILLERS, is a true story about a half-dozen Dark Triad people in my everyday life - narcissists, manipulators, and psychopaths. Three of 'em murdered people, and one came after my wife and me. Print and e-book versions of this (and CLEFT HEART) available at Amazon and elsewhere online. Also at your local bookstore.
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