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For Lindsey, the beat goes on
By Heidi Hagemeier
WesCom News Service
PALO ALTO, Calif. — Lindsey Bingham, spunky in her hospital mask and French braids, grooved her way to the operating room minutes before midnight Wednesday, ready to receive a new heart.
The door opened to the 9-year-old’s room at Lucile Packard Children’s Hospital and dance music from the family laptop filled the hall. Lindsey showed off a few moves, even as her body was still surgically attached to the device the size of a miniature refrigerator that has kept her ailing heart going for nearly eight months.
Caregivers lifted her onto a gurney at the threshold to the operating rooms. “We love you, Lindsey Lou!” her father, Jason Bingham, called as they wheeled her away.
More than eight hours later, doctors at the Palo Alto, Calif., hospital declared the Eastern Oregon girl’s heart transplant a success. The new heart “woke up,” physicians said, beating to its own rhythm and circulating blood through the body.
“So far, she’s right on schedule and doing exactly what they want her to do,” Jason said.
On Thursday evening, Lindsey wiggled her toes and opened her eyes.
She was breathing in part on her own, and they believed the ventilator would come out later Thursday night.
Yet even amid the joy and relief, the Binghams know their journey isn’t over.
Three of their five children have been diagnosed with dilated carddiomyopathy, or DCM, an enlargement of the heart muscle that causes it to weaken. The other two children are healthy but have the genetic markers for DCM.
As Lindsey lay recovering Thursday in the cardiovascular intensive care unit, her 13-year-old sister, Sierra, was four rooms away.
Sierra, the first DCM diagnosis, received a heart transplant in 2006. As Lindsey waited Wednesday for word about surgery, routine checkup tests for Sierra showed abnormalities, prompting doctors to admit her to the cardiovascular ICU. Physicians now suspect antibody rejection as the cause. Jason said they expect to get more test results today.
Scientists only confirmed within the last few years that DCM in children is most often genetically linked. The family didn’t know until Lindsey’s diagnosis in the spring that all their children are in danger.
Still, Jason and Stacy Bingham said they feel humbled and spiritually moved by Lindsey’s transplant surgery, particularly that another family is experiencing grief right as they feel hope for the girl they call “Princess.”
“A family just made the toughest decision of their lives,” Jason said.
The couple hugged and held hands throughout the night, hearing periodic updates on their daughter’s major surgery in progress.
8 p.m. to midnight: the right heart
Lindsey waited at the hospital for the right heart for roughly 240 days. For organ transplantation, the key is finding a matching donor.
Dr. David Rosenthal, director of the Pediatric Heart Failure Program at Lucile Packard hospital, said patients are prioritized for organ donation by how long they’ve been waiting and the severity of their illness.
There are a number of factors hearts must meet for transplant, Rosenthal said.
The hearts of the patient and donor must be similarly sized. The two must have compatible blood types and similar antibody profiles that make rejection less likely.
The individuals must also be close enough geographically, either by car or airplane, to keep the heart muscle alive.
The Binghams learned Tuesday evening of the potential donor. Then waiting ensued. The heart’s arrival time at the Palo Alto hospital was continually pushed back through Wednesday and into the wee hours of Thursday.
Dr. Beth Kaufman, Director of the Cardiomyopathy Program at Packard Children's and a heart transplant physician, described how donation unfolds.
Somewhere, a patient suffers brain death. That person is legally deceased and will never wake again, but his or her organs are still functioning.
The patient’s family then decides to allow the organs to be procured for donation. Information about the donor is typically kept confidential, even from the recipient.
In this case, Kaufman said, multiple organs from the donor were viable. The process takes intricate surgical work to remove the organs and requires synchronizing medical teams in multiple places waiting to perform transplants.
“It’s an orchestration,” she said. “It’s a dance.”
“They’re trying to benefit as many people as possible,” she added. “It takes a lot of time.”
As the clock ticked toward midnight Wednesday, it became more and more certain the donor heart would be ready for Lindsey, arriving in the dead of night.
Fear had overwhelmed her in the hours leading up to the transplant surgery, Jason said. An astute, observant girl, Lindsey asks numerous questions about her medical care. She even probed one of her surgeons about how he would open her chest and wanted to see a scalpel.
“If there’s any attempt to hide something from her, she calls you on it,” Jason said. “We’re honest with her about these things. She knew what was coming.”
12:30 to 6 a.m.: Hope for the heart
After Lindsey was wheeled away, Jason and Stacy returned to the room that had long been their daughter’s home.
They had to clear away all the clothes and decorations and pictures to make way for a new patient. The process involved hauling four large, full Radio Flyer wagonloads to the family Suburban.
They knew it could all be for naught if the heart didn’t appear suitable once surgeons got a look at it.
Several floors below, the medical team was prepping Lindsey for surgery, as well as preparing the ventilator and heart bypass equipment. But they didn’t open her chest. Surgeons would await word from the physicians procuring the organ on whether they believed it to be a good heart.
At 2 a.m., a nurse popped in: The transplant was a go.
“We’ll celebrate together on Valentine’s Day!” Stacy exclaimed.
It was also the cue for the two cardiothoracic surgeons performing the procedure, Dr. Olaf Reinhartz and Dr. Katsuhide Maeda, to open Lindsey’s chest and prepare her for the transplant. When the heart arrived, they would be ready. The surgeons wanted it out of the body for as little time as possible.
With that news, the Binghams retreated to a nook with couches. They stretched out, trying for an hour or two of sleep.
6 to 9 a.m.: Arrival to transplant
The heart arrived just before 6 a.m. through the front door of the hospital.
A white van pulled up and a surgical coordinator from the California Transplant Donor Network, dressed in scrubs, opened the back and pulled out a small cooler. “Heart,” a label on the exterior said. “Human Organ Tissue for Transplant.”
Jason and Stacy didn’t witness this event during Sierra’s transplant. This time, they followed the cooler through the halls, down the elevator and into the operating area.
For the first time during the process, tears streamed down Jason’s face.
“It felt almost very sacred to me,” he later said. “Somebody gave a lot for what was in that cooler. And to see that cooler go down the exact hallway Lindsey went down ... what that represented sunk in.”
The surgeons were now in the home stretch.
By about 9 a.m., Dr. Reinhartz emerged. He told the Binghams the procedure had taken a bit longer than usual but went smoothly.
Reinhartz said typically, transplant recipients remain in the cardiovascular ICU for three to seven days. Then they move to the regular unit. After a period of observation, they are allowed to leave the hospital, but must stay in the area for at least several months and sometimes up to a year.
“The first year or so has the highest risk of rejection,” he said. “The first several months are even higher.”
Jason said Thursday evening that Lindsey is doing better now than she did following her surgery to connect her to an artificial, external heart in June. She’s stronger now, with a healthier liver, kidneys and lungs.
Sierra spent time in Lindsey’s ICU room Thursday afternoon, holding her hand.
For now, Jason and Stacy prefer not to think too much about the future. There are potential side effects and organ rejections down the line. They hope for their children to go on to live normal lives.
Stacy said they decided at Christmas time — spent in the California hospital — that they would take it one day at a time, and to find the positive in what they have. “People say, ‘We’ll be happy when ....,’” she said. “We decided to be happy now. All five of us, together as a family.”