more photosPALO ALTO, Calif. — A week after transplant surgery, Gabriel Lawson took his first few steps with his new heart, and moved from the cardiovascular intensive care unit to the regular cardiac floor at Lucile Packard Children's Hospital.
The 11-year-old Bend boy has been in the Palo Alto hospital since late April awaiting a new heart, his old one damaged by a combination of three genetic defects. His recovery last week was slow but steady. He was under heavy sedation and relied on a breathing tube until Friday. But each day, Gabriel's vital signs improved, as he woke up and started to interact with his parents.
“We didn't see our Gabe until yesterday,” said his father, Seth Lawson.
Doctors got word that a donor heart might be available on July 1, and confirmed it would be a good match for Gabriel. The donor heart is slightly bigger than Gabriel's heart, but within the parameters that would work. Testing showed that Gabriel and the donor had very similar antibody profiles, a 98 percent match.
The doctors told the family at about 10 a.m., dispatched a team to get the heart, and started to prepare Gabriel for the surgery.
“For me it was a mixture of excitement, anxiety, fear, everything,” said his mother, Melanie Lawson. “And for Gabriel, he was freaked.”
As the day went on, Gabriel went through a range of emotions.
“He was very excited,” Melanie said. “He was so happy that he was going to feel better and he gets to go home and get out of the hospital.”
At the same time, he was scared and anxious.
“He was afraid that if he went to sleep for the surgery, he would never wake up again,” Melanie said.
According to his father, from the time Gabriel learned he needed a transplant, he has struggled with the notion that he would have someone else's heart inside of him.
“He was sad that somebody else had to die,” Melanie said, echoing a concern they all shared. “I felt like I didn't want to lose Gabriel, but I knew that somebody else was going to lose their child.You can imagine their pain.”
Doctors said those feelings are not unusual for transplant patients and their families.
“This is not out of the range of what we usually see,” said Dr. David Rosenthal, director of the pediatric heart failure program at Lucile Packard. “Of course, they've been waiting desperately for this moment, but there's some level at which they don't really want this moment to arrive.”
As one surgical team left to get the heart, another was working to get Gabe ready for transplant.
“We don't want the donor heart to sit outside of the body for longer than necessary, because that's when it starts to deteriorate,” Rosenthal said. “So that means Gabe is really prepared for transplant and put on the heart-lung bypass machine, so that when the heart arrives it can be placed straight in.”
The transplantation went smoothly, but once in place, the new heart had trouble starting. Doctors tried using a pacemaker to establish a normal heart rhythm, but when that didn't work, they put Gabriel back on the heart-lung machine, allowing the heart to rest. When they removed him from the machine the second time, the heart started up.
“In the end, it wasn't anything really dramatic,” Rosenthal said. “Of course, at the time it's happening it's nerve-wracking. It was a long night for the surgeons who were operating.”
For the Lawsons, it was a long night of waiting. Doctors had warned them not to expect any updates. No news was good news, they told them. Afterward, when the Lawsons found out about the problems starting the heart, they saw the value in that approach.
“I would not have done well (knowing),” Melanie said.
While his heart is doing well and getting stronger every day, Gabriel is by no means out of danger. He faces the biggest risk during the first 30 days after transplant.
“Once you get through that, you can relax,” Rosenthal said. “But it's also in the nature of transplant that we need to keep an eye on him from this point forward for all the different complications. One of things we need to do is to draw a balance between vigilance and resuming a normal life at the same time.”
Gabriel will have a biopsy on Wednesday to check for any signs his body is rejecting the organ. But doctors have effective medications to prevent early rejection. He may be out of the hospital in a week or two, but will be asked to stay in Palo Alto until the family is comfortable managing all the aspects of his care. It may be a month before the Lawsons can return home.
“You're trading one evil for another,” Seth said. “That's not a bad thing, it's a good thing. “But it's a whole new road. I'm so happy that he's going to be able to run and play, but it's got its own set of challenges that are unique.”
The Lawsons last saw Gabriel run more than four years ago. He hasn't been able to go up and down the stairs. He couldn't walk from the car to a store without getting winded.
“For the past several years, he has slept by our bedside, and every morning for those past few years, he would wake up scared, so we're all trying to adjust to a new start.”
Now with the transplant behind them, they can focus on the next stage of his recovery and begin thinking about resuming a normal life.
“I know there's a reality with transplant of rejection,” Melanie said. “But I feel better. I can breathe.”
Life had been suspended for the Lawsons. They didn't feel comfortable leaving Gabriel with friends or family. They had to juggle errands and chores, making sure one of them was always taking care of him.
“Mel and I haven't had a normal couple relationship in so long,” Seth said. “We want to go on a date. We haven't been on a date in four years, just her and I.”
Now they can dare to dream of dinner and a movie.
“And sleep,” Melanie added.
Gabriel, meanwhile, can resume a normal life. There will be ongoing testing and regular biopsies to ensure his body is not rejecting his new heart. According to Dr. Daniel Bernstein, a pediatric cardiologist at Lucile Packard, Gabriel's heart will continue to grow with him.
“When we first started doing heart transplants in children that wasn't clear,” he said “It wasn't 100 percent known if you put a little infant heart into an infant, whether that heart would grow as a patient gets older.”
Lucile Packard was the first program to describe the growth of the heart about 20 years ago.
“We'd look at young kids who had had heart transplants, and their hearts were growing normally and they were doing well,” he said. “The heart will remodel itself; he should grow into it size-wise, and then it will grow with him as he gets bigger.”
Gabe already has big plans for his new heart. He wants to travel the world and learn different martial arts. He was told he could request something from the Make-A-Wish Foundation, and after long and careful thought and some Internet research, he has requested an Alienware Gaming Computer with a glowing purple display. It's a good sign that he's concerning himself with the trappings of a kid, not the worries of a heart transplant patient.
“We want everything to be normal,” Rosenthal said. “Compared to what he was able to do in the past year or two, although the transplant doesn't get rid of all his troubles, it opens up all kinds of doors that have been closed for a while, which I think he will very enthusiastically embrace.”
This morning, Seth found Gabriel smiling and crying at the same time.
“You don't have to smile for me, Gabe. You can cry if you want,” Seth told him.
“I'm not,” Gabriel replied. “I just don't remember feeling like this.”
