A Murray couple Thursday night will fly to Loma Linda Medical Center in Southern California where their unborn fetus will become the second baby in history to receive a heart transplant immediately after birth.
The unborn child is suffering from a lethal heart malformation.The other case was Baby Paul from Canada. The child, suffering from hypoplastic left ventricle, was transplanted three hours after birth in October 1987. The 10-month-old is recovering and growing normally.
Last week, utilizing sophisticated ultrasound equipment, a specialist at LDS Hospital diagnosed Daymon and Cynthia Petersen's 32-week-old fetus as suffering from hypoplastic left ventricle, which occurs in 8,000 to 10,000 live births annually. The lethal malformation, involving the cardiovascular system, prohibits the main ventricle, or pumping chamber of the heart, to develop properly.
"The hypoplastic left ventricle doesn't create a problem for the unborn fetus, but once birth does occur the survival rate is zero. Most babies die within three to four weeks of life," Dr. Greggory De Vore, director of the Intermountain Fetal Diagnostic and Treatment Center at LDS Hospital, said in a press conference Thursday.
Mrs. Petersen's obstetrician, Dr. Dallis Van Wagoner of Cottonwood Hospital Medical Center, referred to De Vore, who is also corporate director of Maternal-Fetal Medicine for Intermountain Health Care.
Because of the type of malformation, the shocked parents were given two options. They could do nothing, which would mean death for their child. Or, they could travel to Loma Linda where the newborn would undergo an expensive, but possibly life-saving heart transplant.
"There wasn't a decision to make," said Cynthia Petersen, who will be separated from the rest of her family for a year following the transplant. Patients are required to live for 12 months in Loma Linda to undergo extensive surveillance.
She will be surrounded by other mothers, whose children have undergone delicate heart transplants.
A few years ago Loma Linda University Medical Center received considerable attention for being the first hospital to transplant a baboon heart into a child. Since, center physicians have performed 20 heart transplants in children under six months of age. Sixteen of these children have survived the operation.
"The problem with transplanting a newborn whose diagnosis is made after delivery is that with hypoplastic left ventricle, unfortunately only 50 percent of the children referred to the center actually receive the transplant," De Vore said. "The reason is because there is no way to determine when a donor will become available. The babies have a short period of time to keep the baby alive."
De Vore said the benefit of admitting Mrs. Petersen now is that physicians have time _ five to six weeks while the fetus is in the uterus _ to find a donor. He confirmed that the Petersen baby is a boy and the ultra sound shows no other birth defects.
When an appropriate donor heart becomes available, the baby, will be delivered by Caesarean section. The transplant operation will take place immediately after birth. Because a newborn's immune system isn't developed, a transplant is more likely to take. But there is still the possibility of rejection.
The survival of their third child _ to be named Whitney Ray Peterson _ isn't the only worry the Murray parents are enduring.
The transplant procedure costs from $150,000 to $200,000 and is not covered by their insurance company. De Vore said Loma Linda will pick up some of the costs, and a trust fund is being set up in Whitney Ray's name through the Deseret Foundation at LDS Hospital.
The family will be responsible for the rest of the expenses.
"Sure we are worried about it," said Daymon Petersen. "I am just the average working Joe and can't comprehend $150,000. But people are coming out of the woodwork to help."
While Mom is living in Southern California, Dad, an employee of the Utah National Guard, will have the responsibility of caring for the couple's other children, ages 51/2 and 21/2.
Both, Daymon Petersen said, are adjusting to the trying situation. "Our 51/2-year-old was worried that Mommy was going to die."
Now that she knows that isn't going to happen, the youngster, like her parents, is adapting.