By
KRISTA CONGER
Franco
Bernardo had a problem. His hockey team had made the playoffs, but
the 13-year-old Canadian's participation would stop when his team
hit the road. Severe, life-threatening jaundice requires Franco to
sleep on a bed under fluorescent lights -- all night, every night.
It was out of the question to move the bulky phototherapy bed to
Montreal, the site of the competition.
That's when Franco's mom contacted Henk J. Vreman, PhD, senior
research scientist in the Department of Pediatrics. Although Vreman
is a biochemist studying the metabolism of hemoglobin to bilirubin
-- a naturally occurring compound that gives jaundiced patients
their characteristic yellowish hue -- Maria Bernardo was more
interested in his other specialty: designing portable phototherapy
beds for kids like Franco. After hearing of Franco's dilemma,
Vreman custom-made and hand-delivered a bed for him, ensuring
Franco could play in the tournament.
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Henk Vreman studies
light emitting diodes, or LEDs, as a way to reduce bilirubin levels
in children with jaundice. He is working to design a portable,
high-efficiency LED-based phototherapy bed for children with
severe, life-threatening jaundice. The beds will enable these
children to have more freedom. |
"I've dedicated part of my life to helping these families with
whatever it takes," said Vreman, who donates his time and labor to
construct the beds. As word has spread, families of severely
jaundiced children around the world have begun contacting him for
help.
Jaundice is common in newborns. While more than half exhibit some
degree of yellowing, most suffer no ill effects as their livers
take over the placenta's job of metabolizing bilirubin. Some
infants, however, need help to rid themselves of the compound
before rising levels cause irreversible brain damage or death.
Treatment usually involves exposure to fluorescent light that can
break down bilirubin in the skin.
Franco is one of about 300 people worldwide with a serious genetic
condition called Crigler-Najjar Syndrome, or CNS. These patients
lack a liver enzyme necessary for bilirubin excretion. The blood
bilirubin levels of infants with CNS skyrocket shortly after birth
and remain high even after treatment. A liver transplant is the
only cure.
"Without a transplant, these kids are jaundiced for the rest of
their lives," said Vreman. Although intensive phototherapy can
usually control bilirubin levels, the treatment becomes less
effective over time and common childhood illnesses or injury can
cause disastrous spikes. Missing even one phototherapy session can
also cause an ominous rise.
Nightly phototherapy has many downsides. Patients have trouble
sleeping on the beds, which can be hot, uncomfortable and --
obviously -- brightly lit. Usually they must sleep naked without
blankets to maximize their exposure to the light. Young children in
particular may rebel against their unorthodox sleeping arrangements
and sneak out of bed during the night.
"I asked myself ‘what can I do about this?'" said Vreman.
Although he knew he couldn't solve all the problems, in 1998 he
designed a bed that was at least comfortable and portable. The bed
looks like a camping cot with a sheer polyester fabric hammock
suspended over a bank of fluorescent light tubes. The tubes are
contained in a rugged plastic case that can be folded in half for
transport. The mesh allows the light to penetrate to the patient
while at the same time providing a comfortable sleeping
surface.
Vreman and several volunteers including his wife and young
grandchildren, assemble and test the comfort of the beds, which
weigh about 60 pounds and cost roughly $1,000 to make. The
dimensions of each bed are tailored to the size of the child, and
can be adjusted as the child grows.
Vreman provides the bed to the patients at cost. "I get paid in
kindness, actually," he said, adding that he has formed close
relationships with many of the families.
Although the bed travels well, Vreman and his colleagues --
including Daniel S. Seidman, MD, and David K. Stevenson, MD, the
Harold K. Faber Professor of Pediatrics in the School of Medicine
-- aren't satisfied. They've been investigating using blue
light-emitting diodes, similar to the lights used in traffic
signals, to break down bilirubin. This light source is much cooler
and more intense than fluorescent bulbs. Its narrow wavelength is
also more efficient in degrading bilirubin in the laboratory. A
recent study of LED treatment of healthy, jaundiced, full-term
infants in Jerusalem showed that it was as effective as traditional
phototherapy in reducing bilirubin levels.
Vreman recently received nearly $17,000 from the Dutch
Crigler-Najjar Foundation to aid in the construction of the
portable beds using the blue LEDs. Vreman, who is Dutch, maintains
close ties with the foundation, and he and his associates plan to
test the first LED beds in Rotterdam in September. Vreman has also
received past support from the Stanford Office of Technology
Licensing's Birdseed fund, which sponsors prototype development.

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Test could help doctors detect newborns at risk for severe
jaundice (3/14/01) |