The Lengths Parents Will Go to Save the "Heart of A Child"

Show: FRESH AIR
Date: JUNE 04, 1997
Time: 12:00
Tran: 060401np.217
Type: FEATURE
Head: Ingrid Labarbiera
Sect: News; Domestic
Time: 12:00

TERRY GROSS, HOST: This is FRESH AIR. I'm Terry Gross.

My guest, Ingrid Labarbiera has been faced with some of the most difficult dilemmas posed by modern medicine. Her daughter Amy was born with a heart defect and lung problems.

At the age of four, Amy's life was saved by a heart and double lung transplant. But she soon got sick again, and Ingrid and her husband Lenny had to decide whether to let Amy die or put her through a second double lung transplant.

Amy became the first child to ever undergo a second double lung transplant, after a heart/double lung transplant. She thrived for a time, but died before reaching the age of six.

Amy's medical story is documented in the new film "Heart of a Child" by Karen Goodman and Kirk Simon, which will debut June 12 on HBO. I talked to Ingrid Labarbiera about her daughter's life and death.

Although Amy was born with health problems, it took a couple of years before she got very sick. I asked Ingrid if she was always braced for something to go wrong, even when Amy was feeling well.

INGRID LABARBIERA, MOTHER OF AMY LABARBIERA: We were, because she -- well, she had a heart condition that was corrected by surgery when she was young, but there was an underlying lung condition that actually led to her heart failure and her needing a heart/lung transplant. So we always knew that that lung condition existed.

GROSS: Before the transplant, when she was at home, you were both a nurse and a mother, and she had IV that she needed 24 hours a day. And so you had to administer the IV and do a lot of other home care. Was that very nerve wracking for you? I think it's really scary when you're responsible for someone you love, and you're doing something you weren't medically trained to do.

LABARBIERA: It was very, very stressful because the set up that she had was an internally-placed IV. And through that ran two medications then three, and they were on very small pumps. And we needed to constantly add another bag or another cassette of medicine. We did that once a day on each. And the one medicine was actually an experimental drug that has since been FDA approved, but at the time it was experimental so we needed to mix it ourselves.

And it was a drug that she could not be off for more than about ten minutes, or she would turn pale, turn blue, begin passing out -- and another number of minutes and she would have died. And that was something that was always in the back of your mind. That was one risk.

There was one time when I had the pump off for longer than 10 minutes because I made a mistake and the drug couldn't flow through, and she did turn white, stop -- you know, start crying. She didn't have a lot of energy, but she started crying some, and I could see her turning white and her eyes starting to close and I knew that I was in a desperate situation because even to go to an emergency room -- the nearest one was 20 minutes -- and they wouldn't have known anything about this drug. So I was literally on my own.

GROSS: What did you do?

LABARBIERA: I disconnected the other drug that she could stand being off that for a couple of hours, but it took me 10 minutes to think that this is what I needed to do. I disconnected that drug and cleaned out that line -- what they call "flushing" it -- so that there was nothing remaining in that line, and then hooked up the pump that she did need, hooked up that line to the line I had disconnected. Did that make sense?

GROSS: Well -- yeah. No, I understand that. Was it hard for you to get your confidence back after that?

LABARBIERA: Yes. I really did nothing after that -- besides her medical care -- I did nothing, but I remember staring at a wall for about two days, and tears just streaming down my face. You know, it was very, very difficult.

We had a home nurse come and she checked everything -- got the other line up and running again. And she tried to calm me down, but it took quite a bit.

GROSS: When were you told that she needed the heart and lung transplant?

LABARBIERA: Well, she had been on the IV medication starting in May of '94. And she did better until about October or November, and then started to get sicker.

And in December -- it was December 21 of '94, she was listed for a double lung transplant because they thought that her heart could recover from the damage done once she had new lungs. It was the lungs, the pressure in the lungs, that were causing damage to the heart.

Then in February of that year we were still waiting. That's when we went in the hospital to stay, to wait. And she had suffered a pneumonia because she was so weak, and that did irreparable damage to her heart. And so I think it was in February when they said, now, she'll need a heart and double lung transplant.

GROSS: How did you explain the transplant to Amy?

LABARBIERA: We told her that her heart and lungs weren't working well. That's why she was having trouble breathing. That's why she was always tired. That's why she couldn't, you know, could no longer really stand up.

And we told her that the doctors were going to get her new heart and lungs, which was not a lie, because they were. But we never told her where they came from. We just simply said the doctors will get you a new heart and new lungs. It may take a little while. We'll wait in the hospital, and after you get them you will feel much, much better.

GROSS: And did you want her to think that basically they were going to unzip her, take out the old heart and lungs, put in a new one, zip her back up, and ...

LABARBIERA: Right.

GROSS: ... snap, she'd be fine?

LABARBIERA: Well, we never got even into that much detail. She just -- I just think -- I think we told her that the heart and lungs -- you know, we said that they're inside you, and we just sort of didn't answer more questions than she asked because, I don't know, through the years when you have children, you hear things -- you know, answer their questions, answer them directly. But you don't need to go on because they're not really looking for more information.

GROSS: What happens after you get the call? Things must happen so quickly once the donor is located.

LABARBIERA: Well, I was sleeping in Amy's hospital room and the nurse woke me up at 3:30 in the morning and said that the doctor was on the phone. So I went out to the phone and she told me we have a donor. And she said we will be in the OR by 5:30, that was two hours. And you need to go back, the nurse is going to wake Amy up, take her vitals, do an initial prep.

So I waited until the last minute to wake up Amy. I called, obviously, family. I called my husband. He came racing into New York. That first transplant was done in New York.

And I mixed another cassette of medicine because I knew that if her medicine needs to be changed in the operating room, they would want to have that cassette ready to go and ready to be hooked up. So I had a lot to do in those two hours.

Then they took her to the OR, as they said, at 5:30. I woke her up and she said, "I want apple juice." And of course, she had to be NPO which is, you know, nothing to eat or drink. And I told her she couldn't have it. And she said: "I don't want my new heart and lungs, then. I want apple juice."

So I just had to distract her, and she was furious. But then they took her to the OR at 5:30, and then I think she was completely anesthetized by about 6:15, 6:30, prepped and ready to go. But we were told that the child, the parents were donating all of the organs, which was a wonderful thing to do.

So they take the heart and lungs last, so they took all the other organs and ours came last. So I don't think the organs even got to the hospital -- they didn't even start until about 11:00 in the morning, by the times the organs arrived and she was then -- the operation began. So there was a lot of waiting time there, but once we got the call, it was fast to the operating room.

GROSS: When you're an adult and you're facing the prospect of a transplant, you intellectually have some grasp of what's happening, and you know what you have to do to make it happen. When you're a kid, you have no grasp of it. So, like, you're saying, you know, your daughter wanted the apple juice, and said: "I don't want the operation. Just give me the apple juice."

LABARBIERA: Mmm-hm.

GROSS: You can't exactly reason with her. I mean, she's too young to understand all of this. And then you risk looking like a real bad guy because you're withholding what it is that she really wants right now. It must have been so hard for you to be in the position of being the bad guy in your daughter's eyes when what you're trying to do is save her life, but it's beyond her comprehension.

LABARBIERA: As much as she would turn to me, she could also vent with me because I was the one that would allow them to come in and give her other peripheral IVs -- in her hands and her feet. I was the one that -- and my husband, too -- that would allow them to come in and take blood work. I was the one giving her her medicine that she couldn't stand to take at that time.

So there were a lot of times when I was the bad guy. But I think she was smart enough to know that I wouldn't do it just to hurt her. There was a reason.

GROSS: My guest is Ingrid Labarbiera. Her daughter's story -- her daughter Amy's medical story is told in a new documentary called "Heart of a Child," which premiers June 12 on HBO.

We'll talk more after a break. This is FRESH AIR.

(BREAK)

GROSS: Back with Ingrid Labarbiera. We're talking about caring for her daughter Amy, who by the age of four had a heart/double lung transplant.

In the documentary about her, you say that before the first transplant, you watched her personality change. She'd been really good natured. And then the more suffering, the more pain, the more invasive therapy she had to go through, the more crabby she got -- the worse of a patient she became. The testier she became. That must have been difficult to watch, too -- to watch her personality change from all the medical procedures.

LABARBIERA: That was one of the most difficult things that happened because you knew she was so unhappy. And also she was uncomfortable. She couldn't do what she wanted to do. She couldn't breathe right. Her heart was barely pumping, so she had no energy. She could barely eat.

And she was just furious because there was constant monitoring of her. And I remember one time specifically where all she wanted to do was watch a tape. And we couldn't find a half an hour in that entire day to watch a tape. And we had just gotten it plugged in -- I mean, people had come into check her IVs -- everything, everything.

And I finally was able to put the tape in, and five minutes later, somebody else walked in. And she just started to cry. She just couldn't take it. It was like a constant -- constant interrupting. You don't get a break even for five minutes to think. And she just couldn't take it, and she was breaking down crying all the time.

GROSS: There's a moment in the film where you and one of the doctors are right over her bed and she's starting to get really crabby and act up. And you both kind of give her a look, like, you can't do that. We know that you are really hurting; that you feel really miserable, but you can't -- you can't just act up and be cranky like this.

And I -- maybe I was just projecting onto this. But I thought that was just a really nice moment -- of you kind of drawing limits for her, in spite of the extraordinary situation that she was in.

LABARBIERA: I think most people in the hospital -- in both hospitals, knew that there were very few limits that I drew for her. I cut her a lot of breaks, but I didn't look at it as cutting her breaks. I did set limits.

See, in my mind, she was allowed to yell and scream at them as much as she wanted to because, I don't know, you would get comments from some of the residents. Oh, she's making our life so difficult or our work so difficult. And I looked at the one girl one time, and I said, "Do you want to see what difficult is?" I said, "You look in that bed. Your life's not hard."

And I -- I didn't care if she yelled at them. Sometimes she even hit them. But I couldn't be hard on her because there were so many things that I had to force her to do, that I knew when she felt better, she was fine. She was fine. She didn't have behavior problems. She had health problems.

GROSS: Let's get back to the actual transplant, the heart and double lung transplant. What were you told was the success rate of the procedure? 'Cause it's -- you've got two lungs and a heart being transplanted.

LABARBIERA: Actually, we were told that that's a better combination, often, than say, just doing a double lung because it comes as a bloc -- the heart and lungs are left intact. The surgeon that we had -- that was in New York -- was -- he's very, very good. And he was confident of his abilities, so I don't even know that we ever heard statistics. He says she'll be fine. And you left with the feeling that she probably will be fine.

I think what we were more nervous about was after the transplants, because as we've learned now, in losing Amy, there's a lot that can happen after a transplant. But the operation itself is generally a successful operation. But after that is when you face -- you can face a lot of problems.

GROSS: What happened to her after the operation?

LABARBIERA: After that operation, she did -- she experienced a couple of rejections which are -- I should -- relatively speaking, an easy fix. If you start to reject your heart, your lungs, any other organ, generally a three-day course of IV steroids is enough to fix that. And then you go on.

But she made it through those rejections and one other respiratory infection. But it was only about two months after the operation, she started having trouble breathing and she developed what they call bronchialitis obliterens (ph). It's a lung disease that occurs -- I think we were told at the time -- between a third; between a quarter and a third of all lung transplants will end up with this disease.

It's an incurable disease. There's no effective treatment for it. There's one possible treatment that we were never sold on and we were told it wouldn't work very well in our case.

But she developed that, and by August she was on oxygen. She could no longer walk. I mean, she just had a very, very short good period following that heart/lung transplant, and then she became very, very, very sick.

And we start -- we took her to Children's Hospital in Philadelphia. And they said that we could either try another double lung transplant. Her heart was fine. Or we could say good-bye. They would -- that the airways in the lungs would just close up over time, and you could tell that was already happening. She could get the air in, but she couldn't push it back out. So she was becoming poisoned with carbon dioxide. So she was again on a respirator within another month after that.

GROSS: The doctors told you you had two choices ...

LABARBIERA: Mmm-hm.

GROSS: ... the transplant or saying good-bye. Did saying good-bye seem like a choice?

LABARBIERA: Yes. It definitely seemed like a choice because when you looked at the overall time frame, she had started to get sick when she was about three, and that's when the IV pumps started. She had suffered a lot that year.

She had a transplant when she was four. It was only good for a couple of months. And then she already was suffering again -- couldn't walk, couldn't breathe. She used to sleep in bed with me every night. My husband would go into her room. And I would lay awake and just watch her struggle for air.

So that definitely seemed like an option. Definitely.

GROSS: Why did you decide to go ahead with the second transplant?

LABARBIERA: Well, we discussed it all with her doctor in Philadelphia in early September. She had put her on oxygen, and since Amy couldn't walk, we got her a wheelchair. And we said we need a little bit of time to think about this. And I think we had pretty much decided we were not going to go ahead.

And then we took her home. She was four-and-a-half. And she was set to start preschool, and she was so excited -- she could breathe better now, with the oxygen. And she didn't have to worry about walking, because she was in a wheelchair.

And she started preschool, and it was the greatest thing that ever happened to her. She loved it. And there was -- she just didn't want to quit.

She got more back to being the kind of kid that just loved everything. Even at her sickest, you could still see that in her, and now she was given one more chance -- for a little while, that oxygen was helping her -- and she just didn't want to stop. And I said, if she can be this happy in a wheelchair and on oxygen when all the other kids are up and running, you've got to at least give her another chance to feel good again.

So about a week later, we told them that we wanted to go ahead and be re-listed. And I remember I didn't tell her for a while, and we were driving down to Philadelphia for a checkup, and I said. "Oh," I said. "You know, Dr. Bridges (ph) says that another set of new lungs would probably make you breathe a lot better." And she said, "Oh." And I said, "So I think Dr. Bridges may want to do that. She may want to give you another set of lungs." "Oh."

You know, so I just sort of eased her into it. And then before you knew it, she was so sick that she really I don't think cared what happened to her.

GROSS: What was it like to be on the waiting list the second time around? Was that experience any different? And did you learn new things about the whole process of transplant and getting -- getting organs?

LABARBIERA: I think the waiting this time -- I was a lot less hopeful that we would get organs.

GROSS: Why?

LABARBIERA: Because I think I was just becoming tired of the whole thing.

GROSS: Mmm-hm.

LABARBIERA: And there wasn't that hope -- not tired in that I didn't Amy anymore or anything like that, but tired from all the stress. And it was one more time, and I just thought, are lungs going to come through again?

I mean, there are so many people that die on the waiting list. You read this all the time. So many that die every day. There was a boy two beds down from her that was waiting for a lung transplant and he died waiting.

And the lungs that came through for Amy, if he had held on for another two, three weeks, they would have been his. They were the same size and blood type. So he missed by a couple of weeks.

GROSS: Ingrid Labarbiera will be back with us in the second half of our show. Her daughter Amy's medical story is told in the new documentary "The Heart of a Child," which premiers June 12 on HBO.

I'm Terry Gross and this is FRESH AIR.

(BREAK)

GROSS: This is FRESH AIR. I'm Terry Gross, back with Ingrid Labarbiera.

Her daughter Amy was the first child to undergo a second double lung transplant, after undergoing a heart/double lung transplant. Her medical story is the subject of an HBO documentary called "The Heart of a Child" that debuts Thursday, June 12.

You were very ambivalent about this second operation because you didn't want to put her through unnecessary pain...

LABARBIERA: Right.

GROSS: ... if she could just go in comfort.

LABARBIERA: Right.

GROSS: What was it like when she was recovering? Were you hopeful that this time it was going to take?

LABARBIERA: Well, she had a rough two weeks where she developed a virus that sometimes can destroy your lungs, but she got through that. She turned the corner and from then on, we never looked back.

She was discharged a month after her transplant. It was right before Christmas, and she just did wonderfully. She just took off. There was never a doubt that we had done the right thing. Never. And she was not in the hospital for the whole year following until she got this last infection.

GROSS: When she was recovering and when things were looking good, it seems like her personality shifted again -- that she entered this new phase of maturity?

LABARBIERA: Mmm-hm.

GROSS: And I'm wondering if you felt that, even on some kind of unconscious, you know, not analytical level -- that she understood something about mortality?

LABARBIERA: I think so. I think so. I don't know what she understood, but I think she knew she was very lucky, very lucky.

And she had missed out on a good two years of a lot of things, and she just was not going to waste any more time. I do think that she understood on some level that this was a real -- she really squeaked past.

GROSS: One of the ways in which she was physically changed by the transplant was her face got very swollen, very bloated as a result of the steroids ...

LABARBIERA: Mmm-hm.

GROSS: ... that she was given -- and it visually totally transformed her? I'd say her face was almost twice the size what it was before?

LABARBIERA: At least.

GROSS: At least twice the size. Did that change the way she was treated by other children? Or -- and I wonder what it was like for you to look at your daughter and physically see a different person than you saw before?

LABARBIERA: Well, before she got sick, before she was three, she had a pretty normal face. It was full, but it was normal.

And then when she was so sick when she was on the pumps, she was emaciated. So you went from that emaciated look -- she lost, I would say, eight pounds.

GROSS: Which is a lot for a five-year-old.

LABARBIERA: Eight, 10 pounds. Right. And her face was extremely thin. Her whole body was extremely thin, so then you went from that to being very, very large, her whole body -- her face -- and also the hairiness that you get from the steroids. Her eyebrows thickened.

She got facial hair. She got hair on her arms, her back, her legs. She had a very strong reaction to the steroids. It's not always, by any means, that severe.

I would notice kids looking at her. I noticed one friend of hers -- we went over to play on a day when Amy was feeling pretty good, and the little girl hadn't seen her and she hid behind her mother. And I think to the extent that we were out and about in public -- you know, it didn't happen that often. She didn't have that many play dates, because again, there was just a very brief window before she got sick again.

But I could see that she was being looked at differently. I don't think she noticed, and she either didn't notice or she didn't really care. But she would go to the mirror -- I thought, what's going to happen the first time she goes home from the hospital and looks in the mirror?

And I remember her standing in front of our full-length mirror and she just kind of squeezed her face, and she goes, "Look at the chubby face." And it was so funny, because she just didn't care. It wasn't what was important to her.

GROSS: What was your attitude toward being very protective of her? Not expose her to the possibility of infection, and allowing her to live whatever life she had left to live?

LABARBIERA: Our attitude was, you have to be smart about it, in that you can't expose her to known risks willingly. But I also -- we didn't put her through this to keep her at home. She wanted to do everything, and I would check with the doctor. I would check with the nurses. Can we do this? Can we do that?

And I know lots of times, I was asking them questions that maybe they hadn't been asked before, or there's no hard-core data on it, and it was them using their judgment; us using our judgment; and giving her -- and their attitude also was -- it was fabulous -- was don't keep her from doing something unless we're pretty sure that it's a risk. Let's not just keep her home and keep her sheltered for not really a good reason.

So we would send her -- we sent her back to preschool. She was up and walking around -- this was after the second transplant -- a little summer morning camp; gymnastics; play dates; and parties and things. But even though those involved groups of people, we would keep her from an individual situation if there was someone that we knew that was sick.

We couldn't keep her from school because we weren't going to do that. But if there was a play date scheduled and that kid had a little bit of a runny nose, the play date was off.

GROSS: There's a documentary about Amy's life and about the medical procedures, the transplants, that will air soon on HBO, on June 12. Four months after that documentary finished shooting, Amy died. At the end of the documentary, when they were done shooting, things looked pretty good.

LABARBIERA: Mmm-hm.

GROSS: What happened?

LABARBIERA: Well, there are three major things that can happen to a lung transplant. The first is the bronchialitis obliterens, which she developed, which ruined her first set of transplanted lungs.

Another problem you can run into is rejection, which in general you can keep under control. The third is what happened to Amy, and that is -- well, actually, there is a whole class of infections that can develop.

The one that struck her was probably, I would say, their most feared. It's a fungal infection. One of the things that lung transplants are told not to do is dig in gardens, dig in dirt, be in moldy areas because when you inhale those mold spores, you don't have an effective way in transplanted lungs of clearing out that mold. Our lungs can do it. Their's cannot. Also, our immune system is much better than a transplant's because their immune system is lowered through medication.

Amy developed that infection. And the reason it happened to her is there was a problem with her white count. She was not out digging in dirt or doing any of the things. Obviously, we knew the rules. She knew the rules. She would tell her teachers the rules because there are certain prohibitions.

But her white count dropped and I still don't think they know why. And when your white count drops, you really can't fight anything. And these mold spores are everywhere, so just virtually by breathing, she was inhaling them.

And she developed this infection -- aspergillis (ph) -- and they started her on a very powerful drug, called amphetereson (ph). And at first, they were just doing it through an inhaler, and she was taking another oral med, and then they decided that she really needed to be on IV-strength, because it was a pretty serious infection.

So the drug has the nickname "ampheterrible," and what it does, it can destroy your kidneys, which is what happened here. I think in the end, my understanding -- and I'm not 100 percent certain about this -- is that she may have actually licked the infection, but the medication killed her.

And that's one of the problems, is that this is -- you know, we were right on the cutting edge of science, and there are only so many ways to battle some of the problems. Five years from now, a lot more will be known and this may not be such a big problem.

GROSS: Did you know that she was dying as she died? And what did you do to try to make her as comfortable as possible?

LABARBIERA: Well, by that point -- so she was all set to go home. They thought she was getting better. We were going to do one more week of the medicine at home, or keep her in the hospital for that last week, and administer another week.

And she just all of a sudden took a turn for the worse, very rapidly. So she was put on a respirator, and then she got so sick that she could no longer, if she did any movement at all, even breathing above the respirator -- she would decompensate.

So they had to totally sedate her -- it was essentially a drug-induced coma -- totally sedate her and totally paralyze her. These are paralyzing agents, so she couldn't move a finger. She couldn't open her eyes. I question if she even knew of our presence because right before they totally sedated her, she looked at me in the face and for 15 minutes she said: "Where's Mommy? Where's Mommy? Where's Mommy? Where's Mommy?"

And I got an inch from her, and I said, "I'm right here." And I kept saying it, and she kept asking. So she had no cognitive powers left at that point.

So as far as keeping her comfortable, I think they did a wonderful job. They could tell by her vital signs whether or not she was in any pain, and at the least sign of any discomfort, they would increase medication.

So when she died, I had, for the first time, left her because she looked terrible. I hadn't slept. I knew she couldn't hear me, or didn't know where I was. My husband stayed for a few days. He said, "You've got to get some sleep."

So I went home to rest, and then he called me, on a Sunday, and he was crying and he said, "You have to come down." He said, "Her blood is acidotic. And he said, "There is no turning back now."

And we had heard numerous times from the doctor "She may not make it through the night." You know, through each phase of our, you know, first transplant, before the transplant -- so many times, we had heard that. But this time, there was no way out.

So I went down and we just stayed with her through the night, and I guess at about 4:15, we saw the heart rate just start to fall. And the last number I remember seeing on the monitor -- you know, we were just hugging her and crying -- and I remember seeing her last heart rate was 70, and the next thing the nursing supervisor said, "Her heart has stopped. She's passed."

GROSS: My guest is Ingrid Labarbiera. Her daughter Amy's medical story is told in a new documentary called "The Heart of a Child," which premiers June 12 on HBO.

We'll talk more after a break. This is FRESH AIR.

(BREAK)

GROSS: Back with Ingrid Labarbiera. Her daughter Amy died about a year after receiving a second double lung transplant. Did she ever ask you about that?

LABARBIERA: No. The only thing that she ever said was when we went down to Philadelphia, and she was struggling to breathe, and we knew that something had to be done. This was before we had listed her for the second transplant.

She was gasping for air, and she said, "I don't want to grow older. I don't want to grow up. I don't want to get older because I don't want to die."

And I think that her understanding -- she did actually ask me a lot about death in a sense. Anytime she heard someone had died, she wanted to know how old they were.

GROSS: That was kind of protection 'cause they were always going to be older.

LABARBIERA: Right. They were always older. And I think she figured, well, if I'm only five, it can't happen, but I really do feel pretty lousy. So as long as I stay young, maybe it won't happen.

I didn't get into it with her because we just always were hopeful, and I didn't want to put a fear into her that then she would have to live with if things really went well. I just wasn't quite sure how to handle it, but she just took that in stride.

GROSS: While you were going through this whole ordeal there was a documentary film crew with you -- not through her death, 'cause they stopped shooting before that. But it's really a fine film, and they seem like they were probably very sensitive in shooting it.

LABARBIERA: They just really -- really became like family. So I knew after we had met them for a couple of times, there really wouldn't be a problem. And we were also allowed to set limits, like we're just too busy, or we can't do this now, I've got to, you know, do this, this, and this. And so they really worked very, very well.

GROSS: What's it like for you now to have this document of her life?

LABARBIERA: I think it's -- it's wonderful in a lot of ways. I think it serves a couple of purposes. I think it's important in terms of the whole issue of organ donation and educating people what you can do when you donate your organs. I think it's also wonderful to tell people about Amy because I -- I mean, I always wanted to brag to everybody -- look at her.

But to have the actual record of it, it's good. But I've seen -- you know, I've viewed it a few times now and it gets harder each time because the ending -- when you, you know, when you read it in print, you can't run away from it anymore. And that's -- that's what's hard about it.

It's hard seeing how well she does in the end. I think that's harder to me than seeing her sick because now we don't have that anymore. And things were just going well.

GROSS: While she was alive you were a full time mother and nurse and doctor. And at the same time, you had a younger child ...

LABARBIERA: Mmm-hm.

GROSS: ... who was born while Amy was sick. I wonder what you've done with the time that you were using to care for Amy when she required constant care.

LABARBIERA: Well, for that period of time, I'd say for about the first year-and-a-half, because we had the pumps to deal with and then the first transplant -- my mother was at the house, and often my father, too. And they cared for Juliana. I just delegated all my responsibilities of her to them.

And now, there's been a lot of catching up time. My time is still very full. I do all the things with her now that I missed out on doing.

We go to the park. We do little activities. We play with friends -- the things that kids are supposed to be doing, now I'm doing with her. And it's wonderful. We're finally more of a family -- a mother-daughter -- than we had the time to be before.

So my days are still very, very full. But it's not -- they're not full with stress. They're full with sadness, but it's not stressful as it was before.

GROSS: Let me ask you a money question. There's a lot of expenses in just the recovery. How did -- what did health insurance do for you? And what were you left to do by yourself financially?

LABARBIERA: Our insurance, I have to say, was very, very good. Most of the medical expenses were covered, even the second transplant. Most of the medicines -- I would say all of the medicine -- was paid for through insurance.

And I think the one thing that helped us more than anything is any extra that was left over, as well as any out-of-pocket expenses -- a lot of money was raised through our family and friends for a fund -- the National Transplant Assistance Fund in Bryn Mawr, Pennsylvania, assists families in fundraising to cover any transplant-related expenses. The fund was a wonderful, wonderful resource.

GROSS: Are you a medically-designated organ donor if something should happen to you?

LABARBIERA: Definitely. And I think the key there -- you can sign a license, you can sign an organ donor card. Neither one of those, though, is really the key. And this is the key is telling your family members that you want your organs donated because if, God forbid, something happens to you, you don't know that anyone's ever going to see that organ donor card, ever look at your license.

And I think the one thing you have to keep in mind is your family will be going through a crisis at your death. The last thing you want them to worry about, when someone approaches them and says, "Do you want to donate the organs?" You don't want the burden to be on them. Well, what would he want? What would she want?

They would feel guilty if they did donate; guilty if they didn't donate. Don't leave the burden up to them. You need to tell your family, in very clear terms.

Short of doing that, I mean we've all heard how many people are waiting on the list. Constantly, every day, people are dying every day. Children are dying every day. And you don't want to create a situation where your own -- and I don't mean to be too stark -- but your own funeral also becomes the funeral for seven other people because you took your organs and they were buried with you. Each and every time that there is potential for organ donation, if it's not used, someone else will very likely die because of it.

GROSS: Ingrid, thank you very much...

LABARBIERA: OK.

GROSS: ... for talking with us about Amy and her story and your story caring for her. Thank you.

LABARBIERA: You're welcome.

GROSS: Ingrid Labarbiera and her daughter Amy are the subjects of the new documentary "The Heart of a Child," which premiers on HBO Thursday, June 12.

Coming up, the former lead singer of Creedence Clearwater Revival is back with his first solo album in 10 years.

This is FRESH AIR.

Dateline: Terry Gross, Philadelphia
Guest: Ingrid Labarbiera
High: Ingrid Labarbiera is the mother of Amy Labarbiera, the subject of the HBO documentary "Heart of a Child." The film documents a year in the life of four-year-old Amy, who at such a young age had a heart/double lung transplant. Amy later died. The film's producers are Karen Goodman and Kirk Simon. "Heart of a Child" airs Thursday, June 12 at 8:00 pm on HBO.
Spec: Children; Youth; Diseases; Health and Medicine
Copy: Content and programming copyright (c) 1997 National Public Radio, Inc. All rights reserved. Transcribed by Federal Document Clearing House, Inc. under license from National Public Radio, Inc. Formatting copyright (c) 1997 Federal Document Clearing House, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to National Public Radio, Inc. This transcript may not be reproduced in whole or in part without prior written permission. For further information please contact NPR's Business Affairs at (202) 414-2954
End-Story: Ingrid Labarbiera

Show: FRESH AIR
Date: JUNE 04, 1997
Time: 12:00
Tran: 060402NP.217
Type: FEATURE
Head: Blue Moon Swamp
Sect: Entertainment
Time:

TERRY GROSS, HOST: In the late '60s, John Fogerty's band "Credence Clearwater Revival" recorded a series of hit singles that were at once unique and emblematic of their era. Fogerty's blend of rock, southern R&B, and the blues remains distinctive. Those musics are still the primary source of his music, as can be heard on his first solo release in a decade, "Blue Moon Swamp."

Rock critic Ken Tucker has a review.

(BEGIN AUDIO CLIP OF JOHN FOGERTY, SINGER, PERFORMING MUSIC FROM SOLO RELEASE "BLUE MOON SWAMP")

JOHN FOGERTY, SINGER, SINGING:
Way back in the hills
there's a place I know
People come from miles around
Just to watch old Dooley do the show

Ooh, let the blue boy (Unintelligible).
Ooh, let the blue boy (Unintelligible)
He gonna ride the mule gonna
Change some tune
(Unintelligible) on a pony he go.

KEN TUCKER, ROCK CRITIC: John Fogerty is 51 years old, but the most immediately striking thing about "Blue Moon Swamp" is how young he sounds. His voice actually sounds lighter, less raw, and more flexible than it did 10 or even 20 years ago when this Californian's mossy vibrato always seemed to be rising from a dark, southern river.

The best thing about this collection is its delicacy and precision, the way Fogerty and make his love of country music and the Everly Brothers take on fresh life on a cut like "Rambunctious Boy."

(BEGIN AUDIO CLIP OF JOHN FOGERTY, SINGER, PERFORMING MUSIC FROM SOLO RELEASE "BLUE MOON SWAMP")

FOGERTY, SINGING:
Well, I ain't good lookin' and I ain't so smart
But baby I'm a sensitive guy
I ain't done everything there is to do
But I'll damn sure give it a try

I'm a lookin'
I'm a lookin' for a big time bookin' with you
So come on baby
Let's go howlin' at the honky tonk moon

I'm a rambunctious boy
Rambunctious boy
Oh, my, I'm a restless guy
Got a home every where I go

Some trouble on the run
Heartbreakin' son of a gun
Oh, yeah, I'm a rambunctious boy

TUCKER: The problem with staying out of sight for as long as Fogerty has done is that by the time you finally put a record out, you kind of feel obliged to let people know you're OK. And "Blue Moon Swamp" spends a lot of time doing a heart-felt job of reassuring the fans that old John is in much better spirits than he was a decade ago.

Back then, he was still torn up over legal battles with his old label, Fantasy Records, and its President Saul Zantz (ph). Ten years ago, people wondered who Fogerty was referring to when he sang a song called "Zantz Can't Dance."

Now, anyone who watched the Oscars knows that Zantz won an award for producing "The English Patient," which doesn't make Fogerty's criticisms of Zantz any more or less valid. But it does suggest that while everyone around him has moved on, Fogerty, as cheerful as he assures us he is, is also sounding a little bit old fogey-ish.

At his flimsiest, Fogerty is content to rewrite old hits like "Green River" and "Born on the Bayou" with a jauntier tone, as he does on "Swamp River Days."

(BEGIN AUDIO CLIP OF JOHN FOGERTY, SINGER, PERFORMING MUSIC FROM SOLO RELEASE "BLUE MOON SWAMP")

FOGERTY, SINGING:

(Unintelligible) shinin' in the July (Unintelligible)
Heat risin' off the road out front of my truck
Pull my pickup over the hill
Down the slight gravel (Unintelligible)
Gimme those swamp river days again

Sat down in the...

TUCKER: One of the ways to listen to John Fogerty in 1997 is to hear him in the context of the music he helped sire, which these days means what's being marketed under the names of "alterna-country" and "Americana" -- with bands like "Sun Volt" (ph) and "Willco" (ph) and all those other self-consciously raggedy, pointless groups. Compared to them, Fogerty sounds like a smart kid on speed.

(BEGIN AUDIO CLIP OF JOHN FOGERTY, SINGER, PERFORMING MUSIC FROM SOLO RELEASE "BLUE MOON SWAMP")

FOGERTY, SINGING:
Shadows fallin' in my room
Ghost riders dancin' on the moon
Night is closin' in again
Clutchin' to my tremblin' bed
Call your name 'til I'm out of my head
Walkin' the back streets, lookin' for clues
I got to get you back, if it's the last thing I do

I go walkin' in a hurricane
I come crawlin' in a drivin' rain
I keep searchin' 'til I go insane
I got to have it all

TUCKER: If there's no entire song on "Blue Moon Swamp" that possesses the brooding urgency of the best Credence Clearwater music, there are moments here and there, moments when Fogerty's voice rises into a plaintive howl, or when he tears off a quick guitar solo, shredding the notes with distortion to convey the dread behind his smile.

Fogerty may have softened it. But by no means has he lost it.

GROSS: Ken Tucker is critic-at-large for "Entertainment Weekly." He reviewed John Fogerty's new solo album "Blue Moon Swamp."

I'm Terry Gross.

Dateline: Terry Gross, Philadelphia
Guest: Ken Tucker
High: Rock critic Ken Tucker reviews "Blue Moon Swamp" (Warner), the first solo album by John Fogerty in 10 years.
Spec: Entertainment; Music Industry; Blue Moon Swamp; John Fogerty
Please note, this is not the final feed of record
Copy: Content and programming copyright (c) 1997 National Public Radio, Inc. All rights reserved. Transcribed by Federal Document Clearing House, Inc. under license from National Public Radio, Inc. Formatting copyright (c) 1997 Federal Document Clearing House, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to National Public Radio, Inc. This transcript may not be reproduced in whole or in part without prior written permission. For further information please contact NPR's Business Affairs at (202) 414-2954
End-Story: Blue Moon Swamp
Transcripts are created on a rush deadline, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of Fresh Air interviews and reviews are the audio recordings of each segment.