Tough choices, tender situations
By AARON SHAROCKMAN
Published May 28, 2007
ST. PETERSBURG - Before Dr. Jeff Jacobs saved Alyssa Thomas with a new heart, he had come to a much different clinical conclusion.
The 19-month-old was not a candidate for a transplant. And she would not survive.
"It's difficult, " said Jacobs, a pediatric heart surgeon at St. Petersburg's All Children's Hospital. "I have a very high value on life. But I also have to be reasonable."
Reason tells him this:
There are not enough hearts to go around. Last year, 44 children in the United States, 10 years old and younger, died waiting for a heart transplant.
How Alyssa would eventually end up with a new heart and how she was kept alive until the transplant by using a rare and costly device were the life-and-death decisions made at her bedside.
In Alyssa's case, it was hard to tell exactly what choice led where. But Jacobs, one of 260 pediatric heart surgeons in the United States and Canada, always asked the same tough questions:
Would a new heart really save her? Or could another child live longer?
A bridge to transplant
Alyssa's parents rushed her to an Orlando hospital on Jan. 31 after she could not stop vomiting. At one point, her heart had stopped for 52 minutes.
Doctors diagnosed her with a rare and fatal heart disorder that was irreparable.
The revelation led to more questions that would continue over the next four months as Alyssa was transferred to All Children's, which has a team of pediatric surgeons.
Was her brain damaged during the time her heart had stopped?
Was there an infection?
Were her lungs and kidneys functioning?
Yes to any of them would have made Alyssa a risky candidate for a transplant, Jacobs said.
To buy time, he turned to an experimental mechanical device called a Berlin Heart. It would do the work of Alyssa's heart, pumping blood to the body.
Doctors call the machine a "bridge" to transplant.
But as doctors at All Children's Hospital waited for the device - not yet approved by the U.S. Food and Drug Administration and manufactured in Germany - Alyssa had a stroke.
A donor heart would stand a better chance with another child.
"Sometimes we build bridges, but we do not have any place to go, " said the Rev. David C. Gerber, the director of pastoral care at All Children's and the chairman of the hospital's ethics review committee.
On Feb. 8, Alyssa was removed from the transplant waiting list.
An experimental heart
Using the Berlin Heart is far from routine. The cost of the procedure is exorbitant.
All Childrens's chief executive Gary Carnes said Alyssa's medical bills already top more than a $1-million, and over her lifetime, will soar at least $1-million more.
Before the operation, Carnes called the head of the hospital where Alyssa's mother works as a nurse to check on insurance.
"The child is the priority, " Carnes said. "We treat every child." The hospital spent nearly $16-million on free care last year, officials said.
The Berlin Heart itself, which sits on the outside of a child, costs $100, 000. A team from Germany was flown in to assist with the procedure on Alyssa.
The device cannot be reused.
Since it was first introduced in 2000, the Berlin Heart has been used fewer than 100 times in the United States and just twice in Florida.
Nine-year-old Alexzander Wood received the first Berlin Heart in Florida at a Gainesville hospital last September.
It kept him alive for 145 days until he received a new heart three months ago, said his grandmother Margot Wood.
"It was a remarkable thing to see, " she said. "To see the blood running down this tube, knowing it was his heart. We knew we didn't have a chance any other way."
So who gets the device?
There are about 200 heart transplants on children 10 and younger in the U.S. each year, and another 40 to 60 children who die waiting for a donor heart, according to the United Network for Organ Sharing, the group that tracks transplants.
But the Berlin Heart may be used just two dozen times a year across the country, doctors say.
Most children do not need the mechanical device to stay alive, said Dr. F. Jay Fricker, chief of the division of pediatric cardiology at the University of Florida's College of Medicine.
"It's the only thing available to small children, " Fricker said. "But it's not for everyone."
In St. Petersburg, Jacobs had been looking for candidates for the procedure since 2005.
But until Alyssa, there hadn't been a match. Unlike most other children in her situation, she couldn't be kept alive with medicine. And her organs were still functioning.
CAT scans also showed the damage to her brain from the stroke was minimal.
Alyssa received the Berlin Heart on Feb. 23 and it made her stronger. About a week later Alyssa was put back on the transplant waiting list.
Within days, there was a heart.
The news led to another tough choice.
The device had worked so well that Alyssa's own heart had showed signs of improvement.
Alyssa, doctors said, may not need a transplant after all.
"We had two doses of good news but needed to make a big decision for Alyssa, " her father, Alastair Thomas, wrote to family members in an online journal.
"We reviewed our options and decided to reject the heart."
The dreaded words
Days later came devastating news: Alyssa's heart would not repair on its own. Shortly after that, Jacobs made an even worse discovery. A second CAT scan showed brain damage.
"We can't put a heart in, " Jacobs recalled telling Alyssa's family.
"Unless things change dramatically, there's nothing we can do."
Jacobs, who has worked at All Children's for nine years and performed 2, 500 operations, talks about the point when a doctor has to relinquish hopes of saving a life. He wouldn't say if he was there in this case.
What happened next neared on a miracle, Jacobs said.
Alyssa's brain recovered. And after living 75 days with the Berlin Heart, she received a donor heart on April 28.
A week ago, Alyssa left All Children's. She's in rehab in Tampa.
On Friday, Jacobs stood at the bedside of another child in his care. He comforted 23-month-old James Lynn of Naples after performing open heart surgery on him to remove a blockage in the main artery of his heart.
"There's a limited number of these hearts, " Jacobs said. "Ninety-six percent of the patients I operate on go home alive. Once a month someone's not going to live."
The difference, he said, can be razor-thin.
Aaron Sharockman can be reached at firstname.lastname@example.org or (727) 892-2273.