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Oklahoma parents face a rare disease and a decision for life

David and Haleigh Jacobs, of Blanchard, have had to make several decisions regarding their baby boy, Brantley. Brantley was born with what doctors think is Klippel-Trenaunay syndrome.
by Jaclyn Cosgrove Published: April 6, 2012

Some day, 3-month-old Brantley Jacobs will be old enough to understand the hard decisions his parents had to make.

Before Brantley was even born, a doctor asked the Jacobses whether they wanted to keep their baby.

“What we saw in the ultrasound was a 21-week-old baby that could think and breathe — that had a bad leg, and I'm not going to abort a child for a bad leg,” said David Jacobs, Brantley's father.

Now, the Jacobs, who live in Blanchard, are faced with a more difficult decision — whether Brantley's leg should be amputated.

Doctors believe Brantley has a rare disease known as Klippel-Trenaunay syndrome. Children with cases as severe as Brantley's are even rarer than the disease he has.

Brantley's right leg is disfigured, the skin rough, without toes formed at the end. His skin is also discolored on other portions of his body.

Klippel-Trenaunay syndrome is a rare congenital disease, according to the U.S. National Library of Medicine. Its symptoms include swollen blood vessels that cause skin discoloration, varicose veins, bleeding from the rectum and blood in the urine.

A disease is considered rare when it affects fewer than 200,000 people in the U.S. There are more than 6,800 known rare diseases that affect about 30 million people in the U.S., according to the National Institutes of Health.

People with Klippel-Trenaunay might have excessive growth of bones and soft tissue. As is the case with Brantley, the overgrowth of bones and soft tissues usually begins in infancy and is most often limited to one leg, according to the National Institutes of Health.

There is no cure and no known cause for Klippel-Trenaunay. The syndrome is estimated to affect at least one in 100,000 people worldwide, according to U.S. National Library of Medicine.

Before the Jacobses make the decision on whether to amputate at least part of Brantley's leg, they will travel to Children's Hospital Boston on April 13.

A rough life so far

No one knew what was wrong with Brantley before he was born. During an ultrasound, the Jacobses could see clumps of something floating around Brantley in the womb.

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by Jaclyn Cosgrove
Medical and Health Reporter
Jaclyn Cosgrove writes about health, public policy and medicine in Oklahoma, among other topics. She is an Oklahoma State University graduate. Jaclyn grew up in the southeast region of the state and enjoys writing about rural Oklahoma. She is...
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