One Cape Coral family whose son is a recipient of a liver donation reflects on how important organ donations are during National Donate Life Month.
There are more than 110,000 patients currently waiting for an organ transplant, with approximately 18 people dying each day because there are not enough organs available.
Florida’s organ and tissue donor register currently consists of approximately 5.7 million individuals, each of whom has the potential of saving eight lives and improving another 50 with organ and tissue donation.
A little boy’s life was saved after a donor from out of state provided him with a new liver when he was two years old through the help of LifeLink of Florida. The liver came from a family, who the Wiles have never met, who lost their 5-year-old child.
“I think of him every day,” mother Diane Wiles said about the little boy who died.
She said her son Jacob was diagnosed with biliary atresia, a rare liver disease, after she took him to the doctor due to a rash she found on his face when he was seven weeks old. She said the doctor showed more concern about the severe case of jaundice, shown by yellow coloring in his eyes, and sent Jacob to have blood work done. The results indicated he was born with biliary atresia.
The rare disease occurs when the common bile duct is blocked between the liver and intestines. Wiles said the bile does not flow through the liver as it is supposed to do, and just sits there and eats away at the organ.
“The first six months were devastating,” Wiles said. She quit her job and stayed home with Jacob because they could not put him in any kind of daycare.
At eight weeks, Jacob had his first surgery in Miami, which Wiles said involved the doctors taking his intestines and hooking it up to his liver to get the bile flowing out.
“It bought him two years’ time,” she said, before he began to get infections in his liver and was placed on the transplant list for a new organ.
Betsy Edwards, senior public affairs coordinator for the LifeLink Foundation, said after an individual suffers an irrecoverable brain injury and is declared brain dead or is rapidly declining towards brain death, legal death, LifeLink is contacted by the hospital, as required by federal law, to evaluate the patient as a potential organ donor.
“When an individual passes away, we are the organization that carries out the organ donation process,” Edwards said.
The non-profit organization determines if the individual who died designated his or her organs for donation through the online registry of Florida’s organ and tissue donor.
“If that individual had designated their decision for donation either by joining the state’s organ and tissue donor registry, we then work with their legal next of kin to discuss the option of donation, as a way for their loved one’s legacy to continue on after death,” Edwards said.
Jacob was on the wait list for eight months because they had to find a young child’s liver, along with the right blood type, before the transplant could be done.
“The doctors were waiting for the perfect liver,” Wiles said.
Jacob had a liver transplant done on April 29, 2002 when he was 2. The surgery began at 8:30 p.m. and finished at 6:30 a.m. the next morning.
“The surgery itself took about 10 hours,” his mom said, adding that it was the longest wait of her life.
Jacob has never had any rejection of his new liver and his medication is minimal. He takes his medication on his own without his mother reminding him to take it every day.
Wiles said her son understands that someone died and gave up his liver to help him.
“He is everything a fifth grader should be,” his mother said about her “unique” son.
Wiles said, fortunately, the doctors in Miami were phenomenal because her family could not have made it as far as they did without their help.
Every six to eight weeks Jacob has lab work done, which is faxed to Miami to make sure things are still looking good.
“Thank God for organ donors,” she said. “We love the families that say yes; it means the world to us.”
Wiles said she is constantly holding a dialogue with different individuals about organ donation because she was not aware of LifeLink until after her son had the transplant.
She said having those conversations she feels has helped the families heal when they talk to someone who has received an organ.
Wiles said she hopes individuals can find some peace in knowing that they saved someone’s life.
She said that tragedies happen to really good people and when their organs are donated to others, something good comes out of that tragedy.
Jacob will turn 11 next month. He attends Gulf Elementary School.
For more information about organ donations call (800) 262-5775, visit www.lifelinkfound.org or www.facebook.com/lifelinkofflorida or email betsy.edwards@lifelinkfound.org .
“Organ donation is a gift that places no financial burden on the family,” Edwards said.