Brave Hearts
By Donna Hemmila
October 18, 2004
Many of Judy Ashford’s patients arrive in the operating room clutching a special blanket or stuffed animal. She rubs her patients’ backs and cuddles them, sometimes talking about their toys and interests. These nurturing moments are a contrast to the fast-paced, often cutting-edge surgery about to take place.
Ashford, RN, works in pediatric cardiac care at Lucile Packard Children’s Hospital at Stanford University Medical Center, where she assists in transplants and other complicated heart surgeries. For Ashford and other nurses who work in this field, the blend of challenging medicine with the warmth of children is what makes the work so rewarding and professionally satisfying.
Children, from newborns to 17-year-olds, account for about 7% of the people waiting for heart transplants in the United States this year, according to the Organ Procurement and Transplantation Network. The most common conditions that cause children to need transplants are congenital heart defects and cardiomyopathy, a disease that prevents the heart from pumping blood efficiently.
The wait for a new, healthy heart — often the most agonizing part of the procedure for families — can take a few days or a few months. The United Network for Organ Sharing coordinates organ transplants throughout the United States and places potential recipients on a list. Those with the most urgent needs are given priority. For children, an appropriate size must be found, because the tiny chest of an infant cannot hold an adult-sized heart.
As of Oct. 1, 243 children were waiting for a new heart, according to the United Network for Organ Sharing. Twenty-eight of those waiting were younger than 1. Another 26 children were awaiting heart and lung transplants.
“It’s very exhilarating and it’s very emotional,” says Ashford, describing the moment when a family learns a new heart is available for a dying child. “Everyone feels happy that a child is given life, but everyone feels sad that a life had to be given up. It’s a mixed blessing in a way.”
After 22 years as a nurse in cardiac care, Ashford still loves her job, and hopes new nurses will look at this demanding field as a desirable career opportunity.
“I don’t see myself retiring for another 10 years,” she says. “I love what I do. Hands down, this is part of my life. I feel like I’ve found my niche.”
Hard to handle
That niche isn’t for everyone. The emotional intensity can be draining and at times, heartbreaking.
Linda Merritt, BSN, another Packard OR nurse, has worked with adult cardiac patients in addition to pediatric patients.
“I think it’s more intense,” she says of working in pediatrics. “You have such a small little being there, and things happen so quickly with children so you have to really be on alert.”
To do this kind of work, Merritt says, you need to be somewhat compulsive about details during long hours of surgery. A typical heart transplant on a child takes four to five hours, but other cardiac surgeries can take longer. Surgical nurses who assist on heart transplant teams are also involved with a wide range of corrective heart surgeries that don’t involve transplants but many times are more scientifically challenging, Merritt says.
Many times, the surgeons don’t know the extent of a child’s defects until the chest is opened up. That kind of medical challenge motivates Merritt.
For Merritt, who started her career as a nurse in 1968, there is always something new to learn in pediatric cardiac care, especially working at the Stanford University-affiliated hospital, one of the most prominent teaching hospitals in California.
In July, Stanford physicians made international news when they attached a miniature ventricular assist device to a dying 3-month-old boy. The device, known as the Berlin Heart, has been used in Europe, but has not been approved for use in the United States. The Stanford physicians petitioned the Food and Drug Administration to approve the use of the heart pump on Miles Coulson, a baby from Dixon, Calif., who was dying of heart failure possibly caused by a virus.
No heart pump small enough for an infant is approved in the United States, and, therefore, the FDA allowed the hospital to import the tiny pump, which attaches to a baby’s chest. The FDA has granted emergency approval to use the device in three U.S. cases. In 2000, a 7-year-old Arizona boy was the first.
The procedure of attaching the device to the Coulson baby kept him alive until a donor heart turned up in early September.
Such high-drama cases can create emotional turmoil for caregivers, particularly those nurses directly involved in the pre- and postoperative care of pediatric heart patients.
Support system
For Flori Legette, RN, DN, the agony has intensified since she gave birth to her own baby about a year ago. She is one of five RNs who work as heart transplant coordinators at The Children’s Hospital in Denver. Since she became a mother, Legette says, it’s become more difficult for her to see infants who need transplants.
“I go home every night and I thank God that I’m not going through what these families are going through,” she says. “They put their whole life and faith in you.”
She works with the families from initial diagnoses throughout the transplant procedure and years of follow-up care. In some cases, she begins working with families before babies are born because physicians sometimes can identify heart conditions in utero.
Transplant coordinators give families a consistent point of contact through every step of the transplant cycle. Legette helps place a child on the transplant waiting list, and arranges for families to come to the hospital when a donor is found or to admit a child who becomes too ill to wait at home for a new heart.
She stays with the child during the surgery and gives the family regular updates on what is happening behind the closed doors of the operating room. She oversees postoperative care and tracks the children throughout their adolescent years.
A big part of her job, she says, is patient education, and that is one of the attractions for many transplant team nurses. Legette was a special education teacher for six years before she entered a four-year doctoral program in nursing geared toward people with undergraduate degrees in a non-nursing field. She worked in an ICU step-down unit before joining the transplant coordinator team. All those experiences helped prepare her for the educational work she does with families and the pediatric patients if they are old enough to understand. After a transplant, a child faces a lifetime of medications, and parents need to learn to watch for danger signs of organ rejection or failure.
“Another huge part is providing emotional support,” Legette says. “Families get into a cycle where they think a heart is never going to come. We become their family.”
Celebrations and sorrows
The hospital has done 250 transplants since 1990, she says, and 200 were successful. Legette typically has 38 to 40 patients. “I’d say three-fourths of my patients I know intimately. I’m pretty attached to the kids that are close to my son’s age.”
In April, one of Legette’s transplant patients, an 18-year-old girl, passed away.
“It was devastating,” Legette says.
There are days when she goes home and cries to her husband, but she tries to leave the negative experiences at the hospital and focus on the positive and rewarding side of her job.
It’s not always easy for transplant coordinators to detach themselves from their work because they quickly can become a central focus of a family’s life.
On a recent Friday, Sarah Clunie, RN, BSN, the cardiomyopathy/heart transplant coordinator for Texas Children’s Hospital and Baylor College of Medicine, was paged 74 times.
“My pager is on 24/7, 365 days a year,” she says, and it’s not unusual for parents to call her in the middle of the night if their child becomes ill. She typically works 60 to 70 hours a week, not counting the middle-of-the-night phone calls.
Texas Children’s is the largest pediatric hospital in the United States. The heart center performs about one heart transplant a month, Clunie says, but as of September already had performed 15 transplants this year. Like Legette, she manages the heart transplant patient from diagnosis into adult life. Texas Children’s performs transplants on newborns to 17-year-olds but provides follow-up care until the patient turns 24.
“That’s what’s rewarding with this job,” Clunie says. “You celebrate with the patient. You cry with them. You become a big part of their life.”
One of the exhilarating experiences is making the call to tell a family a donor heart has been found. Clunie said she gets goose bumps every time. But a transplant isn’t a cure, and that’s one of the hardest parts of the job.
There is no way to predict how long a transplant can prolong a life. The average length of survival time for all heart transplant recipients is a little longer than nine years, according to the American Heart Association. Based on actual transplants performed between 1996 and 2001, the Organ Procurement and Transplantation Network found children, from newborns to 17-year-olds, have an 84% to 89% chance of surviving a year after receiving a new heart. The five-year survival rate for that age group ranges between 70% and 75%.
“I had one little guy who waited in the hospital seven months for a transplant,” Clunie says. “The day he got his heart, he was so excited. He was a child with a wonderful spirit.”
After his transplant, Clunie says she worked hard to get him home in time for Christmas, and she did. In the end, though, he didn’t make it.
“Sometimes, despite everything you do, it doesn’t work out,” Clunie says.
She depends on her faith to see her through the difficult losses, and she focuses on the times of celebration. Every year she goes camping with 120 cardiology patients from the hospital in a program she helped start called Camp Pump It Up. The free camp-out, sponsored by the heart center, often is the first time young heart patients are away from their families and have a chance to enjoy outside physical fun like rope climbing and swimming. Seeing a child who had been struggling for life get a chance to run and play is one of the biggest rewards.
“Despite the many hours and lack of sleep, I wouldn’t trade my job for anything,” Clunie says. “Each day you come to work, you don’t know what you’re going to encounter.”
Donna Hemmila is a freelance writer.