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.
This turned out to be dried blood. When Brantley was born eight weeks early in December, he was bleeding because of a quarter-sized hole in his buttocks. Doctors had to stitch up the hole and start a blood transfusion within two hours of his birth.
In the first 12 weeks of his life, Brantley received 14 blood transfusions and seven plasma infusions.
At birth, he weighed 4 pounds 3 ounces, a pound of which was his leg. His leg was tender and would burst open and bleed because of the pressure inside it from the extra fluid. All of the leg bones are present inside Brantley's leg, but the extra fluid in his leg has weakened the bones to the point that he probably could not use them.
The family was at an Oklahoma City hospital for eight weeks. They were then transferred to Arkansas Children's Hospital. When Brantley arrived by plane in Arkansas, doctors found — along with complications from Klippel-Trenaunay — that he had not only E. coli but also meningitis. He recovered from both diseases, and he and his parents have been home for a few weeks.
Currently, the prognosis is for doctors at Arkansas Children's Hospital to amputate at least a portion of his leg in June, unless doctors in Boston say otherwise.
At this point, Haleigh and David Jacobs want to do what's best for their baby.
If doctors amputate his leg at the knee, there's a chance he would still be able to walk with a prosthetic.
“If there's a chance that we can have him walking and running around, we sure want to do it,” David Jacobs said.
Haleigh Jacobs has taken hundreds of photos with her cellphone and is keeping everything, from the ultrasound pictures to the emails the hospitals have sent her. When Brantley is old enough, his parents will hand over all the information.
“So that way, he'll know,” she said.