Making Impossible Choices
-- Pat W.’s Story

Parent of an Infant Heart Transplant Recipient

When her infant son was just hours old, Pat W. and her husband had to make an impossible choice: to allow the baby to die or to subject him to the pain and trauma of a heart transplant. Today her son is six years old and doing fine, but the decision to go forward with the procedure will affect Pat and her family for the rest of their lives. What follows are her own words.

Our son was born on October 17, 1992. We knew by the next morning that the problems were severe -- hypoplastic right heart -- the lungs weren’t hooked to the heart, the aorta was in a different place, and there were blockages in the heart valve. For the first 24 hours, we thought there might be a surgical remedy, but there wasn’t. They gave us two choices as parents: to hold the child and have no machinery on and let him die or to do the transplant. It took us about 48 hours to make the decision, and the doctors and hospital personnel gave us no help during that 48 hours. No information, nothing.

They told us nothing other than the fact that we had to make a decision as to what we wanted to pursue. We had to decide 48 hours after birth whether we wanted the child to live or die.

We had to make the decision and do all the research ourselves. Immediately after giving birth I was talking to parents of kids with heart transplants, seeing how their successes were. That was really rough -- talking to mothers who had lost children.

My husband got on the Web and spoke with friends and anyone with information. Someone suggested Loma Linda in California, so them. They had nurse practitioners that were assigned to deal with calls from parents who were making these kinds of inquiries. They sent us a videotape and a brochure Federal Express, so we had it the next morning. They showed us pictures of the kids and what happens, and their success rates. Their success rates were 85 percent -- if you get an organ. The children looked normal -- I mean, they looked reasonable.

Once we had agreed to transplant, we knew we were going to transfer to Loma Linda. But before Loma Linda would accept him, a clear definition was needed of exactly what the problems were. They needed to make sure that I and the child were not HIV positive. Then they needed to be sure they understood how we were going to pay for the care.

Loma Linda demanded, before they worked him up any further, that we give them a check for $26,000, which was the cost of the transportation. Since we had traditional indemnity insurance, Loma Linda didn’t have to go through any managed care organization to get approval for the care. We had to pick up 20% of all the costs, of which the transportation cost was part; they knew that the health care costs were going to be paid for, and that’s why the bond was so little. It was unclear whether or not the transportation of the child by medical jet would be covered by my insurance. It’s fascinating to have your only child need care and the only way that anybody in that place would work on him was if we came up with $26,000.

They wouldn’t transfer him unless he had those tests because the people at Loma Linda wanted to make sure that he was a good candidate for a transplant. The baby needed a neurological exam. They also checked the other organs to see whether or not the heart was the only organ damaged or whether there were others. Typically, other organs are affected. Because all the organs are connected, if there’s damage in one, there’s damage in others. So my son had to go through a battery of tests for kidney function and liver function.

Then, the only thing left was whether or not we could follow the regime of organ transplant. That regime, at least in this case, would require us moving across country. If we were lucky enough to get an organ, and if we were lucky enough for the child to survive, then we had to go through anywhere from a four to six month out-patient clinic regime, and Loma Linda needed to know how we would support ourselves while we were waiting.

They wanted to make sure that we not only had the financial wherewithal, but the emotional wherewithal to handle it. We had to go through a conference call with 4-5 people on the other line at Loma Linda: one social worker, a cardiologist, a cardiac surgeon, a couple of nurse practitioners, and then my husband and I. They asked questions about employment record, any mental illness, any drug use, how do you like the idea of giving medications every eight hours for the rest of your life, had you thought about letting the child die -- very difficult questions.

This decision caused lots of problems between my husband and myself. I instinctively wanted to allow the child to die because this was way too much pain, way too much intervention, for me. My husband instinctively wanted to fight it. It caused tremendous friction between us because of the decision to pursue.

After the conference call with Loma Linda, they said that we were fine. That emotionally, mentally, financially, we were on the positive extreme. So the child was transported on a Saturday, one week post birth.

When we landed in California, we didn’t have a clear understanding of organ procurement. The people that educated us about organ procurement throughout the U.S. were the nurses. The nurses are very good, and they run primary care. They run 12-hour shifts, so you get to know these nurses like they’re you’re family. If you want to sit with your child, you sit with your child and his nurse, who’s looking, literally, at three small children, most of whom sleep 15-18 hours a day. Socially, that’s great, because they explain the system to you. None of the administrators, social workers, or doctors did that.

The nurses negotiate the system for you -- that’s actually part of their primary role. If they’re doing their job, they’re advocates for the patient. They’re the ones who remember your name. They’re the only ones who know who you are -- the only ones you have a personal relationship with.

I had no idea how the system worked. If you have never gotten an organ before, then you get higher priority, which is kind of fair. Then, with infants, hearts work by blood type and by size. We were extremely lucky. You can’t be any luckier than we were. Our son was AB+, so he could take an A, a B, or an AB, so we had three likely blood types to go on the list. In the southern California UNOS list, he was #1 instantly for an infant heart for B+ and AB+, because it’s such a rare blood type, and he was third on the list for A+ because it’s a very common blood type. (#1 and #2 on the list were also in Loma Linda.) So, you know your ranking, you even know your competitors waiting for the organs, and you feel guilt over that competition.

Then you wait for holidays -- major holidays like the 4th of July, Thanksgiving, Christmas -- because there are more traffic accidents. If you think about children, the only two ways that children become available for organ donation is from child abuse and car accidents. If they get a disease, their organs probably aren’t worth harvesting. The nurses were very hopeful, because he was born in October, that there would be an organ at either Thanksgiving or Christmas.

We waited six weeks, and Thanksgiving came and our beeper went off and they said we had an organ. It’s very strange. You know that your child could die the next day or during surgery. Somewhere between 25-50% of the kids who go in for surgery die on the table. It’s like going to your own death.

The surgery took about 5-6 hours, and we knew within 24-48 hours that everything looked good. Our son ate the next day. But there is really awful pain, tremendous pain, for the child. Within 48 hours we knew that our son was doing fine neurologically. He was discharged to us at our apartment within 10 days.

We stayed in California for four months. First, we went to the clinic everyday, then three days a week, then eventually two days a week, then one day a week. He had no rejection and he’s still fine. No neurological damage.

You really go through life crises, and it’s really hard for both spouses to maintain careers. Our marriage is fine now; I work full-time, but my husband retired. There’s just too much stuff to do, if you compare normal kids’ stuff and then look at our son’s stuff.

My son’s still on two anti-rejection medicines, and he will be on those for the rest of his life, unless they come up with something else. It runs about $300 per month for Cyclosporin, and the other one is about $60 a month. We don’t have a long term plan for my son and Loma Linda never gave us one. Looking ahead, to when he’s no longer our dependent, he’s not insurable. We have to save enough money to take care of his health care costs for the rest of his life.

The problem for my son is that the blood vessels attached to his heart will begin to corrode much like old peoples' arteries corrode. He may need another heart transplant or other organs that are being affected by the drugs may need to be replaced. Then you get into the whole ethical situation of how much is a human life worth, and whether or not you’re willing to pay all of these costs for one person. You really begin to wonder what you’re doing if you go into multiple transplants for one person.

They’ve been doing this procedure for about 10 years, but there's no counseling for the children or their parents. Really, as parents, we needed to be taught how to talk with our child about this decision we’ve made for him -- when he realizes that the body we’ve chosen for him is a substandard body. So, you’re saddled with the guilt of first you choose it, then it’s extremely expensive, then you have to live with the repercussions, and then your child may blame you for your choices, because he’ll have to go through life with a substandard body.

This is a fascinating disease because, psychologically, if you have a handicap, people notice it and you begin to accept it throughout your life. But with this, there is no visible disability. A transplant child looks like any other child. Most people don’t believe it -- his scar has healed over, he’s perfectly normal, goes to normal school, normal everything. It’s like the worst of all worlds because everyone thinks you’re normal and perfect, but you have a longevity problem. Some day, the other shoe will drop, and when it drops, it can drop very hard.

That’s our story. Our kid’s doing great.