By Tom Wilemon, The Tennessean
The wedding photo hangs next to an urn containing Hilary Lane's ashes.
a bouquet of roses, she smiles confidently into the camera. A year
after gastric bypass surgery, she was no longer a size 24 and was fast
on her way to fitting into a slim 6.
But she never stopped losing weight.
surgery she had in 2005 triggered a genetic mutation to take over her
metabolism and prevent her body from processing proteins. The music
teacher at Whitsitt Elementary School had wasted away to only 88 pounds
by the time she died in April. She was 43.
While a gastric bypass
can help severely obese people maintain a healthier weight and in some
cases even cure diabetes, the surgery has its own set of risks. The
death rate from the actual surgery is less than 1 percent, but
complications can occur later, ranging from calcium malabsorption to the
rare genetic disorder that killed Lane.
"I want people to
understand the risks involved," said her husband, Randy Lane, who had
hoped to be celebrating his sixth wedding anniversary this month.
surgery, which is performed on about 220,000 Americans a year, does
more than restrict what someone can eat - it also changes how the
digestive tract absorbs food. Patients have to maintain special diets,
take supplements and be closely monitored.
Yet doctors really
don't have any other effective options for treating morbid obesity,
generally defined as being 100 or more pounds overweight. Lifestyle
changes, such as diet and exercise, are rarely successful for these
patients without surgical intervention. Prescription drugs have been
yanked off the market because of adverse - sometimes deadly - side
effects. No new diet drug has received U.S. Food and Drug Administration
approval in more than a decade, although the agency's recommending
committee has endorsed two medicines, Qnexa and lorcaserin, that could
become available later this year.
For Hilary Lane, gastric bypass
surgery seemed to be the only option. No one knew then to warn her about
a rare and difficult-to-detect genetic disorder called acquired urea
Her problems began about four years after the
gastric bypass surgery. Doctors at Vanderbilt University Medical Center
were perplexed. No nutritional equation worked because her body was
turning protein into ammonia and her liver was failing to convert it to
urea. Her body could not excrete the toxin.
Cynthia Le Mons, the
executive director of the National Urea Cycle Disorders Foundation,
believes the complication that led to Hilary Lane's death is not as rare
as doctors think. She knows of six women who have developed urea cycle
failure after gastric bypass surgery since 2007. Five of the six died.
"That's just the tip of the iceberg," Le Mons said. "If we know about it, it's just a microcosm of what is going on."
The surgery requirements
Although almost a third of Tennessee's adult population is obese, the
number of state residents classified as morbidly obese who would
qualify for gastric bypass surgery falls to between 5 percent and 8
percent, said Dr. Ronald H. Clements, Vanderbilt's director of bariatric
Hilary Lane qualified. She weighed more than 300 pounds.
Although she was no couch potato, she had been heavy since elementary school, said her sister, Catherine Parks McAfee.
was the most active overweight person you have ever seen," McAfee said.
"She was never sedentary. She was diving coach of the Sequoia Swim Club
for 25 years and a music teacher at a Metro elementary school, always
going, doing choirs and private lessons for piano and all kinds of
Hilary Lane met her husband on Match.com, and their first
face-to-face encounter was at a Bellevue restaurant on a winter
"She had a magic smile," he said. "Her eyes were incredible."
She had not had the surgery yet, but her weight didn't keep him from asking her out again.
not really a vain person," Randy Lane said. "Outward appearances don't
really affect me. I go more for personality, intellect. You have to be
The following summer, she told him about her plans to have
the surgery. It took place the year before their wedding at Smiley
Hollow, a family farm in Ridgetop that hosts special events.
was probably the best day of her life," McAfee said. "I'd say she felt
like a princess. She was where she had always wanted to be."
first years of the marriage were wonderful. Hilary Lane enjoyed planning
weekend camping trips and being close to nature. The couple loved
spending mornings on a bend of the Harpeth River near their Kingston
"We would sit there in our chairs, drink coffee, read the paper and watch the river float by," Randy Lane said.
The health complications
The first indication of a problem was the continued weight loss.
Later, the ammonia spikes interfered with her thought processes and
caused personality changes.
"At first they tested to see if maybe
she was throwing up," McAfee said. "They didn't know. She had no signs
of that. Every time she was in the hospital, there would be more and
more questions - almost like we were the first case ever."
Lane ended up in the intensive care unit at the Vanderbilt hospital a
year and a half ago, but she recovered. Then she got sick again.
fall, she just started deteriorating," Randy Lane said. "It was a
cruel, cruel disease. You can't do anything about it. You just watched
her get weaker and weaker. When her ammonia level would go up, things
didn't make sense to her. She hurt all the time from last September
until she passed. She was in constant pain."
The genetic disorder,
which typically affects children, involves a deficiency of an enzyme
that removes ammonia from the bloodstream. Eating protein causes ammonia
spikes, but when people with the disorder don't eat protein, their
bodies begin breaking down lean muscle mass.
"We were in this
dilemma," he said. "She would take nutrients but her ammonia level would
go up, and to get her ammonia level down, of course, she couldn't take
any nutrients. That's the cycle she got into."
The family did not learn until shortly before her death that she had acquired urea cycle failure.
The genetic disorder
There are few documented cases in medical literature about gastric
bypass surgery triggering the genetic mutation into action, according to
both Dr. Clements at Vanderbilt and Le Mons, who heads the foundation
for the disorder.
Testing for the mutation before the surgery is a
challenge because more than 300 mutations have been linked to the
disorder, Le Mons said.
"Those are just the known ones," she said. "We have kids and adults coming out of the woodwork with new mutations all the time."
medical decision involves a risk-benefit analysis, Clements said, and
patients are warned about complications from gastric bypass surgery.
However, it has proven to work better than anything else to help
morbidly obese people maintain a healthy weight, he said.
Even those who are able to lose 100 pounds without surgery often gain it back.
had some patients lose 500 pounds over their lifetime, gaining and
losing, gaining and losing that same 100 pounds or so," he said.
"Bariatic surgery is absolutely not the perfect fix-all, be-all,
everything is going to be lovely afterward. That's not true either.
There are risks associated with the operation - absolutely no question
Clements said anyone who has the surgery requires long-term follow-up. Bone density is something doctors watch.
you do a gastric bypass, you decrease the absorption of fat," he said.
"Vitamin D has to be dissolved in fat before your body can absorb it. So
when you cut down on fat absorption to be able to lose weight, you also
cut down on the ability to absorb vitamin D. The area of the intestine
that we bypass in the gastric bypass is also largely responsible for
But the benefits of the surgery far outweigh the risks, Clements said.
Randy Lane wants people to realize that those risks are real.
not mad at the surgeon that did it," he said. "I'm not mad at
Vanderbilt. I'm not mad at anybody. This is just something that
happened. But there's got to be a Ph.D. out there that can figure this
Gastric bypass risks
• Permanent damage to the nervous system.
• Diseases of malnutrition, such as pellagra, beriberi and kwashiorkor, which is caused by a lack of protein.
• Strictures, or narrowing of the areas where the intestine is joined.
Within the first 30 days:
• 0.2 percent among those who had laparoscopic Roux-en-Y, the most frequently performed gastric bypass.
• 2.1 percent among the small percentage of patients who had open Roux-en-Y gastric bypass, a more invasive procedure.
rates for other types of gastric bypass surgeries were not included in
the government-sponsored study, which involved 4,776 adults.
Two studies are under way by the National Institute of Diabetes and
Digestive and Kidney Diseases, but data have not yet been released.
- Source: National Institutes of Health
Types of gastric bypass surgery
Adjustable gastric band: Works by decreasing food intake.
Less invasive than other surgeries but has a higher failure rate. A
small bracelet-like band is put around the top of the stomach. Its size
can be inflated or deflated with a circular balloon filled with saline
solution inside the bracelet.
Roux-en-Y: Makes the stomach,
duodenum and upper intestine no longer have contact with food. A pouch
is created that sends food directly to the small intestine.
Removes a large portion of the stomach, reroutes food away from much of
the small intestine, and changes how the body absorbs calories. The
surgery produces significant weight loss, but it has increased chances
for long-term problems, including anemia and osteoporosis.
Vertical sleeve gastrectomy:
Removes most of the stomach, which may decrease a hormone that prompts
appetite. Traditionally done as the first stage of a duodenal switch,
but some patients lost weight without the second surgery.