my heart vs. the real world: children with heart disease, in photographs & interviews; published by cold spring harbor laboratory press, 2008.

ventricular septal defect, subpulmonary stenosis, transposition of the great vessels

"It's been a long ride. You never look at your kids in the same way, I think. I've never said 'Why us?' because I feel like it's a gift. I look at it as an honor, like, wow, what a cool thing that I get to do, to take care of this person like this, to have it humble us."

- megan, mother

"I didn't even understand her problem until maybe four years into it. I just had a block because I just mentally couldn't handle it. My husband's a plumber; the day they explained the problem he got it, 'cause it's plumbing."

- megan. mother

pulmonary stenosis, single ventricle, L-transposition, implanted pacemaker

"I'm sort of like an ordinary kid. I feel as healthy as any child could be. [But] I'm the only person in my school with a pacemaker or a heart problem. That doesn't really bother me because I don't really get offended if people call me names. . . Kids try to be more careful around me. . . When I tell kids about my heart condition they try to treat me with more respect. And my friend, his sister acts really nice to me. Sometimes I even think she likes me. A lot."

- dylan

transposition of the great vessels, implanted pacemaker

"Am I afraid of anything? Swimming. I have this stupid fear of sharks. Even in swimming pools. But finally I talked myself out of being scared of sharks in swimming pools. Now it's just oceans. [Also] I worry that I won't have anybody to really help me after my next surgery. I can't walk for like three to four days. I can't walk without hurting myself. Sometimes I worry about what it would be like if I didn't have anybody to take care of me. And maybe like if I ever got married, if I ever had a kid and he had a heart condition I'd feel kinda bad 'cause maybe that's my fault."

- mario

hypoplastic left heart syndrome, implanted pacemaker

"She's never been scared of the hospital. She's always wanted to go. I know, she's very strange. In fact, she cried when we were leaving. She didn't want to come home.

"I never held anything from her. Instead of trying to keep it quiet or not telling the truth, or telling half-truths -- I'd rather tell the truth, and tell things how they are. Yeah, it's gonna hurt. Of course it's gonna hurt."

- jill, mother

tetralogy of fallot, heart-transplant recipient

"Most decisions are driven around him: where you're going, what you're going to do, what you may not do. Obviously we would do things totally different if he was a normal, healthy child. He's not involved in things that we typically would've been involved in with a 7-year-old. . . You keep going, you keep doing things. But you know what? The reality is he does fine. He compensates in every way and there's no telling what his future really holds.

"He's socially unbelievable. . . He manages to fit in no matter what the circumstance at school. . . Everywhere he walks, somebody's stopping to say hi to him. He would make his rounds to the front office to see all the ladies every day, he'd sit and eat his lunch with one of them. He does extremely well in group settings. Every year we have a transplant open house. People come over and it is always funny to see. Doctors show up and nurses have shown, but really it's teachers. Prudential's health case person came out. The person that pays the claims was coming out. People meet him and they remember him. They don't forget him in any way."

- craig, father

missing left coronary artery

"Nicole was never diagnosed with anything as a child. She always looked fine. She was 7 years old when she had her first surgery. . . She was running at school and she passed out and fell right on her face. . . They did an angiogram and saw that she was missing her left coronary artery. For seven years the left side of her heart hadn't been getting any blood to it at all. I've got pictures, it's really amazing. . . They did surgery almost instantly.

"She's made the medical books a couple of times. This is where we are today. They do not give me any future prognosis at all. They're very safe. I don't think they know. They can guess, but. . . they're just doctors."

- phyllis, mother.

transposition of the great vessels, valve replacement

"[Do I feel different?] It's hard to say, since I've had this my whole life. It's not like all of a sudden I got something and I was perfectly normal before. It's made me introspective, I guess. But I don't know. I haven't gotten spiritual or nothing."

- scott

"I haven't really told anybody [at school about my condition]. Most of them just know. They never really made fun of me about it, but they've made fun of me because of the scars and what it looked like. But that's kind of over with since middle school. People are more mature. My life is completely normal. I'm like everybody else. Nobody really sees me as anything special, but I guess I've had a different experience."

- scott

"He doesn't really talk about [his condiition]. It's not that important. I've noticed him being a little more self-conscious now that he's a teenager. But it never bothered him before. . .

"I still worry more about the little things. . . All the other surgeries came upon us so quickly. You know, I felt the same way then. Oh, he's had this surgery, he's doing well, and then all of a sudden he's regressed or he's had a little episode. And then it all comes back. But in between I was always really optimistic, and he's doing so well. So it's hard to let go of that completely. A parent always worries. . . I don't know that I'm that different from other mothers. I just had a bit more to worry about."

- penny, mother

"I don't worry about it too much because I think he can do what he can do, and he's not going to do anything really stupid. He can't and he knows that. He's pretty much self-limiting. He's very concerned about his grades. But he'll stay up late at night to get his work done and you really can't do that. It tires him and he'll get sick. He'll think he can do it all, that there won't be any consequences. He tries to do everything and it's very difficult to talk him out of things. But that's his personality. He wants to do everything, that's just the way he is. He takes on too much."

– penny, mother

single ventricle, mitral valve atresia, transposition of the great vessels, implanted pacemaker

"When I first talk to anybody with a heart problem, they talk like me. They act like me. It's like they are me. They just forever stay in my mind. . . I think that everybody that has a heart problem, we're just very kind to one another. The girls all call me with their problems. I think they can relate to me more.

"You wake up from anesthesia and you don't know what happened. Whenever I go to sleep, I always think, am I going to wake up from this? Am I going to have huge patches keeping my rib cage closed? Am I going to have everything go wrong? But I never forget to say thank you to every doctor I talk to. Thank you. And sometimes it's even a little bit sweeter that you woke up and everything's fine. You have to go through pain, but you live the of your life just fine. . . There's ups and downs. And I'm going to have a few of those. And hopefully I don't have to go way down. You just wait, you know? I just think, this is going to be fun. It's like a roller coaster."

- grant

hypertrophic cardiomyopathy, implanted defibrillator

(with her mother, estella)

"I was born the year my sister died. Her name was Rayna Marguerita Folgar. I had a brother and a sister. They both died at the age of 10 from a heart attack. . . They didn't know what happened to my sister. She had fainting spells but they thought it was just something little. They didn't know what it was so I guess they just ignored it.

"The same condition that my brother and sister had, both my parents have it, too. My mom's mom died when [my mom] was three. We don't know what from, but possibly for the same reason. . .

"I had a fainting spell just once, at 10, at school -- fifth grade. . . They kept asking my parents 'What's your family history?' and when they asked them that, they took me out of the room. They didn't want me to find out what was going on so they took me out of the room. . . The day I found out was the day they told me I needed surgery. It came out way too fast. . . I just couldn't believe it."

- patty

tetralogy of fallot with pulmonary atresia, noonan's syndrome

"Micah was born into a difficult life. Despite that he has always been an incredibly happy kid. Micah always wanted to be in the fast lane. He wanted to drive fast cars. He wanted to be able to fly an airplane. He wanted to ski. He wanted to do the big rides at the amusement parks. It was just such an emotional roller coaster ride throughout his life."

– kim, father

"There was a questionnaire sent out. . . about your view of yourself. Micah would give himself the highest marks on every question. He thought of himself as being good at a lot of different things, even though many of the things in question he'd never done. And his personal appearance he had no problem with. He didn't hesitate to put down that he thought he was a good looking guy.

"Somebody once said that of course he's a lover. He somehow knows that he doesn't have very much time and he has a lot of life to live. Maybe they were right. He has never seemed to have a lack of girlfriends throughout his years. Usually he'd have two or three girlfriends in any given class. I don't know where he got that ability. I certainly didn't seem to be blessed with the Romeo syndrome, personally. It's just phenomenal that somebody who has seen so much adversity in his life is probably the most socialized individual in my home."

- kim, father

"I have struggled all my life, always comparing myself to other people and finding myself coming up short. I guess Micah gives me hope that I could become a better person. And now, with Micah being gone . . It's kind of a frightening world out there. . . Of all the opportunities Micah gave me to care for someone, he kind of took me out of the need to examine my own life, socially. I don't have that person to back me up anymore.

"I just hope that having been in Micah's presence for as long as I have, that I can step up and give it my best and reach out for positive things in life, and say, I can do this, I can go out and develop friendships and meet people and develop a life of my own, similar to what Micah had. I mean, I look at him and say, gee, here's this guy who face life with one arm tied behind his back, and didn't even notice it. . . I hope I can do that well. It's kind of a frightening thought. Can I live a life that will match up to the standards set by my son?"

- kim, father