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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.