The gift of life.

The Gift of Life

Miracle. It's a word one doesn't expect to come across routinely. Yet the word miracle keeps coming up again and again--in a reporter's story, in a parent's narrative, in a professional's assessment.

Denise Maloof, a staff writer for the Gwinnett Daily News of Lawrenceville, Georgia, began her February 7, 1989, report: "The infant transplant team of Loma Linda University's Medical Center deals almost daily in miracles. And currently team members are surrounded by 28 living miracles who visit either weekly, monthly, or yearly for preventive checkups. Some of these squealing miracles are still young enough to travel in their parents' arms."

"It's the miracle we've been waiting for," said Mario Stork, father of an infant about to receive a transplant on February 28, 1988, at Loma Linda.

Lawney and Christina Falloon are the parents of Krysta, born with hypoplastic left-heart syndrome on December 9, 1988. Krysta received a new heart on December 29, when only 20 days old. "This has meant an incredible amount to us," says Mr. Falloon. "You start to take life for granted. When something like this happens, it jolts you into reality and you realize how easily life can be lost. We and our daughter have been given a second chance, and we'll always be grateful for what Dr. Bailey has done for us. He performed a miracle; it's that simple. If this had happened just three years ago, Krysta would have died."

Between 2,000 and 3,000 babies are born in North America each year with incurable heart disease. Of these, between 20 and 30 percent are born with hypoplastic left-heart syndrome, a defect in which the left side of the heart, which pumps blood through the body, is underdeveloped. There is no cure. Traditionally, parents have been told to take their infant home to die.

Until Dr. Bailey. Until Baby Fae.

On October 26, 1984, Leonard L. Bailey, M.D., professor of surgery and chief of cardiothoracic surgery, sewed the heart of a baboon into the chest of a dying baby girl called Baby Fae. For 21 days the procedure worked--until Baby Fae's kidneys failed, and she died. However, Baby Fae did not die in vain. Her legacy is the gift of life for all those who have followed.

What the team learned from Baby Fae gave them courage to continue their fight to save these dying infants. She had not rejected the heart, as many had predicted. She also died a much more peaceful death than she would have, if she had not had the operation.

Perhaps the most lasting contribution of Baby Fae was public awareness--awareness of the need for donor hearts, awareness of the alternative to certain death offered by infant heart transplant surgery.

A year after Baby Fae's historic operation the team performed the first human-to-human transplant in a newborn, 4-day-old Eddie Anguiano, who was known as Baby Moses. Eddie is the longest-surviving infant to receive a heart transplant. He will be 5 years old this November.

The next milestone in the infant heart transplant program came on October 16, 1987, when Paul Holc, a Canadian infant just 3 hours old, received a heart. He became the youngest person ever to receive an organ transplant of any kind.

His condition was diagnosed at nine weeks before birth, and he was put on the list to receive a heart. When a donor heart was located, Baby Paul was delivered by cesarean section and received his new heart three hours later. The donor had been an anencephalic infant.

Anencephaly, an incurable defect in which most of the brain and skull are missing, occurs in about one of every 1,500 to 2,000 live births. It can be detected through testing early in pregnancy. Some parents choose to end the pregnancy, but others decide to allow the child to be born.

Most anencephalic infants are still-born or die within hours or days. All die soon--95 percent within the first week after birth.

On Sunday, August 20, 1989, another milestone was reached when Steven R. Gundry, M.D., associate professor of surgery, successfully transplanted a new heart into 20-day-old Katherine Lehto, the 50th young infant to receive a human heart at Loma Linda.

Since January 1988, the survival rate has been a phenomenal 95 percent. Nearly all the survivors have done well so far, with normal growth and development.

Miracle indeed.

The following is a portion of an interview vieh Dr. Leonard Bailey by the editors of Loma Linda University Scope: However does the public's awareness of infant heart transplants help solve the problem of donor supply?

We need a steady reminder that children who need organs are dying every day, and there are children dying every day who have health organs to give. It is a terrible waste and tragedy.

We are generating a growing interest on the part of people to donate infant organs.

On the surface, infant heart transplantation sounds like far-out treatment. In reality, it is one of the most conservative things you can do for a baby with incurable heart disease. You can use all sorts of other radical procedures to get them to age 4 or 5, and then watch them die. But transplantation is a truly conservative approach. To get others to believe that is a matter of education.

The more public exposure our transplant program gets, the harder it is for people to resist becoming involved. We simply have to let them know that it isn't such a devastating thing that happens; it's really quite matter-of-fact. Someone's got to stay up all night, but that's about all. In fact, these babies get well quicker than a lot of others.

There are thousands of babies born each year in the United States with incurable heart disease. Why aren't they all on a list somewhere waiting for a transplant?

Referring physicians are skeptical people. They're convinced that there aren't enough donors, so why should they send the family all the way to Loma Linda just to be disappointed? But that is gradually breaking down. The more physicians hear about the good results from transplantation, the more willing they are to get themselves involved in the transplant effort.

Most of the babies who have been referred to Loma Linda have been self-referred. Distraught families keep asking, "What about a heart transplant? We've read of babies getting new hearts!"

What is the ratio of those who are referred here to those who actually get a transplant?

In the past 18 months, almost all of them have received transplants. We've discovered some interesting facts in the process. We almost never have to turn a donor down if we have six or eight babies on the waiting list, whereas if there is only one or two waiting, we may turn two or three donors down waiting for the heart for a particular baby. We'll make a heart fit somewhere if we have enough options on the list.

About 110 babies die every day in this country, of all causes. While we're sitting around here talking today, 12 babies in California will die. If we could see only one of those babies a day as a donor, we'd be in business.

What are the main causes for death in the donors you have seen?

About 40 percent of all the donors we see have died from trauma--such as accident or child abuse. Sudden infant death syndrome (SIDS) and birth asphyxia each constitute another 20 percent. The remainder die of infections such as diarrhea. In this country, each years 500 babies die from diarrhea. Perfectly normal hearts--perfectly normal babies until they get a terrible diarrhea. But the potential donor resource is tremendous.

What is your success rate transplanting infant hearts?

We have a survival rate of a little better than 95 percent in the pase 42 Consecutive infant heart transplants.

It's convinced the Alignment by has to do with it. It's almost humanly impossible, given the condition of these babies. These were babies with incurable heart disease in all states of decompensation!

From our statistics today, if you're a baby and have a heart transplant, you have an actuarial chance of about 87 percent of being alive at 3 years, better than you can say for most conventional heart surgery for complex disease.

What are some of the major changes you have seen since you began to transplant hearts into these babies?

Loma Linda, essentially, has grown up and matured since October of 1984. I've learned a lot. I've learned a lot about life in general, and about the expectations of people from all around the world. I've also been busier than I've ever been in my life.

We're getting better at what we're doing as we go along. Very frequently now, babies are being discharged in 10 to 14 days, instead of six weeks. Our outpatient clinic is working like clockwork. The babies are seen a couple of times per week after discharge for a while. We used to ask that families move to the Loma Linda area for the first year after the transplant. Now most families are able to leave for their hometown in as few as six months, returning just four times a year for checkups.

Has your attitude changed or remained the same regarding the role of the media?

I've come clear around on that. I was brought up to believe that doctors were aloof to the media; they didn't belong in media events. But in an area where the very life of a project is a public investment, we can't duck the media. The press has been extraordinary good to us.

Donors are an international resource. We have no way of manufacturing donors, and unless people understand that what we're doing is appropriate, we won't have a chance for donors--or for recipients, for that matter. People don't want to take a chance unless they can believe in the program, unless there is someone they can believe in. We have had to learn how to cooperate, in a professional sense, with the media, to enhance our relationships with the population.

Have there been any changes in the attitude of your scientific peers toward cross-species transplants over the past five years?

There have been some very significant changes. The scientific world has come fully around. These days I'm not asked: "Are you every going to do any more xenografts [cross-species transplants]?" It's always "When are you going to do the next one?" This is coming from professionals, not the media (although they're asking the same questions). Very highly regarded professional peers are asking when we're going to get on with this, and what's left to do before we continue this project.

Five years ago very few people in science were thinking of cross-species transplantation. Now, there are about a half dozen good scientific centers involved. It won't be anything like last time when it just seemed to come out of the blue.

It's very, very difficult to educate even the scientific community about the things we did correctly with Baby Fae, about the things that went wrong, and about how we can correct for that. But as a group, by and large, they're understanding it very clearly now and accepting it.

How have you been received by your own colleagues here at Lome Linda?

My colleagues have been very gracious here. I've sensed very few sour grapes. I hope everyone feels a piece of the action.

In many ways, that is probably unique about this place. In an Ivy League center, there would be a lot more squabbling with your own people than here.

Baby Fae could only have happened in an institution like ours, where people know and trust each other well enough to get the project through the approval process, even up to the board of directors.

Why are other medical centers not doing as much successful infant heart transplant surgery?

Because for about 10 years nobody else thought this was worth two twits! Until now, they simply have not seen fit to invest the time and effort.

Now that they know it works, will infant heart transplants become as widespread as adult transplants?

I think there will eventually be regional centers around North America and the free world doing infant heart transplants.

So far, there is only one center--our own--that has turned out a large and reasonable track record.

Several institutions are finding it hard going to get the program started. A surgeon has to convince people that it's worthwhile, convince an institution to take that chance. You have to have pediatric cardiologists and pediatricians who are willing to hinge their loyalties on the program, willing to lose occasionally and not turn on their heels and walk away.

But they will develop; it takes time. Stanford has started their program. On the West Coast, ours and theirs will probably be the major programs--but it takes a lot of time and effort

Waldena J. Gaede is managing editor of Scope, a quarterly magazine published by Loma Linda University and Loma Linda University Medical Center. Reprinted by permission.