The gift: The shape of a heart

The final installment of a three-part series on organ donation

By Kris Leonhardt

Editor

MARSHFIELD — Jason Anderson was born in August 1971. Weighing just four pounds, he struggled from his first breath.

“He came into the world not in very good shape,” explained Carol Anderson, Jason’s mother. “They took him away from me right away and put him in an incubator. … They already knew that he had some sort of heart condition. They didn’t know what.

“Then they did a heart cath when he was 2 years old. That is when they take these tubes and do a study of the heart.”

Jason suffered from a congenital heart disease: Tetralogy of Fallot.

“It was one of the worst heart conditions a child at that time could have,” explained Carol.

At age 5 Jason had his first heart surgery at Mayo Clinic.

“He never really seemed to recuperate out of that surgery,” Jason’s father, Larry, said.

Soon the Andersons were back at Mayo.

“At that time they did a real in-depth study of the heart,” said Larry. “Here the two arteries were mixed up, and the blood was going backwards through the heart. He wasn’t getting oxygenated blood.”

“He was just a toddler. … The backside of the heart is usually where all of the stuff happens, and that’s in old people,” added Carol. “They told us at Mayo that he had the heart of an 80-year-old man.”

Doctors explained to the Andersons that Jason may or may not survive surgery to correct his condition. If it was not successful, he may have been dependent on a wheelchair or may not have lived a very long time. If it was successful, it would be the first of its kind.

The Andersons had to decide.

“One day he was looking out the window and saw the neighbor kids playing on the snow pile, and he just stood there and watched,” said Carol. “We knew that we had to give him a chance.”

“At Christmastime he had a heart attack,” recalled Larry.

The Andersons returned Jason to the Mayo Clinic, where staff stood waiting for them with nitroglycerin in hand.

The surgery on his enlarged heart to correct the Tetralogy of Fallot took 11 hours. Surgeons flipped the arteries, repaired three leaking valves, and replaced Jason’s aortic valve with a pig’s. It was successful, and Jason resumed a somewhat normal existence.

At age 13 Jason would need to replace the pig valve with a human valve.

“They told us then that there was a possibility of transplant,” said Carol.

In 1990 Jason was fitted with a defibrillator and pacemaker, and 10 years later he was placed on the transplant list.

The transplant list

“He went on the list in 2000,” said Larry. “He came down with cancer (in 2003), so he had to go off of the list for two years.

“He was a very hard match because of the three surgeries. He had so many different antibodies in him from other people’s blood that they said he was going to be a very difficult match.

“When he was placed on the list, he had to be on the bottom because he was fairly healthy. One year during the Fourth of July holiday they put him up to the top of the list so that if the match came he would get it even though (he was healthy).”

At that time Mayo expected up to five donated hearts to come in over the holiday weekend. The clinic received just one. “And it was a bad heart,” added Carol.

“Jason had a scar on his leg that was in the form of a heart,” said Carol. “When he was 5 years old, the drugs were so strong that it released blood from the inside out.

“I was rubbing his leg, and I felt something wet. There was blood coming out of his leg. When it healed, it healed in the shape of a heart.”

On Dec. 14, 2007, Jason was placed in Saint Joseph’s Hospital and never came home. Jason passed away on Dec. 21, never having received a heart.

“Jason was on the list for seven years, and it’s hard for us, but he had a lot different circumstance than most people who get a heart in about two to two and a half years,” said Larry.

“Heart donation is a good thing because somebody else gives you life. That is why it is so important for people to sign up to be a donor. If there are not enough donors, there are not enough hearts,” he added.

For more information on organ donation in Wisconsin, visit donatelifewisconsin.org.