Ailing Fargo tot defies the odds by getting lucky -- twice

Organ donation can be like a roll of the dice. Luck changes suddenly.

It seemed luck was not with 20-month-old Kobe Giesen, his little heart failing. Then things got even worse: A transplanted heart failed and it seemed all was lost.

But then, luck can change.

Today a heart is beating strongly in Kobe's chest -- after a second transplant last week. It's a first for the Mayo Clinic, doing two heart transplants on one child in the span of a week.

"We were very, very lucky," said Dr. Joseph Dearani, Kobe's transplant surgeon. "And sometimes it's better to be lucky than good."

Kobe was diagnosed at three months with a heart condition called dilated cardiomyopathy. For no known reason his heart became enlarged and weak. Other than drugs to help his heart pump, there is no treatment. Except a transplant.

Karmen Giesen, 33, said they knew eventually he would need a new heart, but they tried to keep Kobe, their third and youngest child, going for as long as possible. That changed quickly in early June when he began having trouble breathing, said his mother.

"We took him to the clinic and he was admitted right away," she said. "They said his heart was getting worse."

The next day she and Kobe were airlifted to Rochester, while his dad, Shane Giesen, followed in the car. Karmen said they were sent to Mayo so Kobe could be evaluated and put on the transplant list. She figured they would be there for a few days, Kobe would have a few tests, and they would be home in Fargo, N.D., with their two older daughters by the end of the week.

The next morning he had trouble breathing again. Then his blood pressure crashed, and doctors told the Giesens that Kobe would be dead within hours unless they put him on a heart-lung machine to pump his blood.

"At 8 a.m. he was sitting up in bed, cranky and not feeling good. But he was awake. It went fast down hill," Karmen said.

That was the lowest point, she said. "I told my husband, we are going to have to say goodbye, I don't think he's coming back," she said.

Kobe's heart was so weak he could not be sedated while they poked him and put in intravenous lines. His arms and legs felt freezing cold to the touch, but his head was sweating. His heart was working so hard, she said. "It was horrible."

The heart-lung machine is always a bad option, said Dearani, and it was particularly bad for Kobe. Patients have to be heavily sedated and on a ventilator. They lie flat on their backs for weeks, while their bodies are pumped full of blood thinners. Kobe reacted badly to one of the drugs.

"There are bleeding problems," Dearani said. "It gets to be a vicious cycle."

There is another, newer device to assist the heart that is designed for children, but it's not yet approved for use in the United States. Dearani knew that if he could find one, Kobe could use it under a special compassionate-use provision. But none were available.

A week or so after he was put on the machine, nurses noticed that he wasn't moving his left side. The little boy had had a small stroke.

On June 15, Father's Day, Dearani called the Giesens into a private room.

"We didn't think it was good when he said 'Let's find a place to talk.'" Karmen said. "He told us they had a heart. But it was not functioning optimally." It had come from a little girl in Texas, who had died from child abuse. The heart had been damaged by an hour of resuscitation efforts. It might work. It might not.

"We asked him, 'What would you do if you were in our shoes?'" Karmen said. "He said he would take it. We really didn't have a choice right then."

Right after surgery, Dearani could tell the heart wasn't going to work. If Kobe could live for just a little while on the heart-lung machine, the heart would recover, but Kobe wouldn't live long enough. The next day, Dearani put Kobe back on the transplant list.

Organ donations are always a little like a toss of the dice. Someone dies and donates a heart. Somewhere else, someone lives. In children as young as Kobe, little donor hearts that fit are extremely rare.

"We had nothing to lose by relisting," he said. "If it comes up great. If not, we know we tried."

Luck rebounds

Kobe's status was 1-A because he was so sick and because he was dependent on a heart-lung machine. That put him on the top of a short list of children needing hearts.

But children's donor hearts are rare. For example, last year in the five-state organ donor region that includes Minnesota, only four of the 144 donor hearts came from infants or toddlers, according LifeSource, the organ procurement organization. In 2006 there were only two. The average wait for a heart for Kobe would be 45 days.

"There are so many factors that have to come together to make this happen," said Meg Rogers, director of organ procurement for LifeSource.

At 8:30 a.m. on Wednesday, June 18, the phone rang. Karmen and Shane, exhausted after the first all-night surgery, were still asleep. It was way too soon to expect the call. "It wasn't what we were thinking," Karmen said.

But it was a heart, this one from a child who had drowned. It was a good heart. Dearani transplanted it into Kobe that day.

He's off the heart-lung machine and doing well.

"That's where we are today," Karmen said. "We have a ways to go. But at least we are going in the right direction."

Organ donation is anonymous, and the Giesens will probably never meet the parents of the children who gave their hearts to Kobe.

"I thank God that they did decide to give that gift," she said. "I won't know what it's like to be on the other side. But I know it wasn't an easy choice."

Josephine Marcotty • 612-673-7394