Excerpt: 'A Different Life'

April 3, 2009 — -- Quinn Bradlee was born to a mother who was a best-selling author, Sally Quinn, and a father that was the longtime executive editor of the Washington Post, Ben Bradlee.

But what set Quinn Bradlee apart was something much smaller than the looming shadows of his parents. He was born with a hole in his heart that required invasive surgery. For him, that was just the start of health and developmental problems.

Visit Quinn's Web site at FriendsOfQuinn.com

From a young age Quinn Bradlee suffered from several illnesses, but it was not until he was 14 that he was accurately diagnosed with Velo-Cardio-Facial Syndrome, a disorder expressed through a number of physical ailments and learning disabilities.

In his new book, "A Different Life: Growing Up Learning Disabled and Other Adventures," he shares his inspirational story of everyday challenges and triumphs.

Read an excerpt of the book below and check out more excerpts in the "GMA" Library.

Mr. Mellow

When I was ?rst born, everyone thought I was totally and completely normal. According to my mom, the nurses called me "Mr. Mellow," because while all the other babies would scream and cry, I would just kind of look around. She also says that when she ?rst had me in her arms, she told me that she loved me and that I could be anything I wanted to be in the world.

But pretty soon after I was born, my doctor detected a heart murmur, and when I was about three months old, I had to have open-heart surgery. (Heart defects are a pretty universal symptom of VCFS, but we didn't even know I had VCFS yet.) I had what's called a ventricular septal defect, where blood leaks from one side of your heart to the other. The doctors put a Dacron patch over the leak. It's a piece of durable plastic that stays there forever, and your heart grows around it.

I think this was a pretty crappy time for my parents. They thought I might die, and I could have died. My dad and the Post were getting sued by some guy, and I think the day I had surgery was the day that he had to go into court and he lost. (He eventually won, so it turned out okay, but that day he lost.) It was not a great time for anybody.

My mom says the night before my heart operation was one of the worst nights of her life. She wasn't allowed to nurse me. She could barely even hold me. When they took me into the operating room the next day, she basically fainted. Apparently my dad turned to her and said, "Just think of it this way. He'll never have to go to war."

My dad says that his favorite image of me is from just after the operation. My mom was on one side of me, and he was on the other, and I was holding their ?ngers. I was out cold, but my dad says that I held on, that I just held on and kept going. I don't know if I came through that surgery with ?ying colors or not, but I came through. I won't give up when it has something to do with my health. I still have a scar from that operation that goes more than halfway down my chest. After the heart surgery, I was always sick with something. I think my parents thought that once they did the surgery I'd be ?ne, but it didn't work out that way. You should see my medical ?les. They're about six inches thick.

One thing that helped me make sense of my illnesses as a kid was that both my mom and my dad had almost died when they were young. It's like it runs in the family. My dad had polio, and he watched his friend die next to him in the ambulance on the way from school to the hospital. When her dad was ?ghting in Korea, my mom had to live for almost a whole year in a hospital in Japan. She was so scared for her dad at the front lines that she couldn't eat, and they had to keep her on an IV for months. At one point her appendix ruptured and she almost died. Her friend in the bed next to her actually passed away. So we've all faced it. And we're all ?ghters.

The ?rst bad thing to come for me, after the heart surgery, were the seizures. A lot of them, starting when I was almost two. This is from a doctor's letter from just one of my many visits to Children's Hospital:

This is a 26 month old male child with a four month history of seizures who the evening of admis-sion had a fever which rose rapidly from normal to 104 degrees, at which point he was noted to have a grand mal seizure. He had been in his normal state of health until that afternoon, when he was noted to have a fever. The family gave him baths, Tylenol times two but the fever continued to climb. Private MD was called who advised to continue the same therapy, after which the temperature continued to climb to 104. Child had a seizure and was brought to the emergency room here from where he was admitted. Since his arrival to the hospital he had one seizure in the emergency room and was seen by the senior resident who admitted him. There is a history of seizures since February of 1984, initially occurring at a rate of several per week.

I can only imagine how freaked out my parents must have been. Especially my mom, because she freaks out about everything. Also, they realized when I was around that age that my immune system was screwed up. Whenever an infection went around, I would get the worst version of it and end up with bronchitis or pneumonia.

By the time I was two, my parents could tell that I had some issues other than my health. They put me into a "regular" nursery school, but within a week the teachers told my mom that I couldn't hack it. They gave me my own tutor and everything, but it still didn't work. I started with speech therapy. The doctors did some testing on me for various known genetic conditions, but I didn't have anything anybody recognized.

I only really remember one hospital visit from this period. I was running around naked at our house in Washington and a bee stung me right where it hurts. There was some bad swelling involved. Not a very pleasant way to discover you are allergic to bee stings.

It was always something. I had surgery for a hernia. At one point I had a prolapsed lung, which means part of my lung was basically collapsed, and they thought it might be cystic ?brosis. I had to have what's called a sweat test, where they put these weird gloves on your hands and then test them afterwards. My mom says that the whole staff at Children's Hospital told her to pray that I didn't have it, because it would mean I would have died in my twenties. Luckily, the tests were negative.

I rarely felt totally healthy, and I was at the doctor's of?ce constantly as a kid. My mom says she felt like she lived there. This description is from a doctor's visit when I was eight, and it's typical of many of my visits to the doctor during these years:

Teacher describes Quinn as "out of it," cannot concentrate (spacey). Allergies, stomach ache, rash under arm and neck, temperature 100 last night.

It was constantly like that. And those were just the minor ones.

When I was about four, my parents put me into the Lab School, a new school for learning-disabled kids in Washington, D.C. I was the youngest kid there. I think I might have been the youngest kid ever to go there. But they were very welcoming to me.

Up until that time, there really weren't very many places for learning-disabled kids to go. The Lab School was the ?rst place in Washington that was set up for somebody like me. I don't know what I would have done without it. Sally Smith, a great lady who recently passed away, founded the school, and the teaching focused on what kids could do, not what they couldn't. Lots of learning by doing, lots of art.

The truth is that I don't remember a lot of my particular experience at the Lab School, but I do remember my second- or third-grade teacher, Ms. Spruance. She was the best teacher in the world, and I was her pet. During class she would give me back rubs. My dad says I spent the entire year sitting in the prettiest teacher's lap, and that was about right. I would sit on her lap while all the other kids were doing work, and she'd just give me back rubs. She was really, really good to me. So was Neela Seldin, who was the head of the lower school and was always pretty forgiving when I got into trouble.

I also remember Sally Smith. When I was in grade school, I could always tell when she was coming around the corner. For one thing, she had a really big presence, but for another she wore the same perfume as my grandmother did. So I could always smell her when she was on her way, and it was like, "Okay, time to stop screwing around." Just another way Nana looked out for me, I guess.

***

When I was little, it was pretty clear to everybody that I had some problems speaking. I didn't really realize it, because my mom could understand me and I talked mostly to her. But I do remember one time we went to the drugstore, and I asked the guy for something, and he couldn't understand me. I asked him three more times, but he still didn't get it. I turned to my mom and asked, "What's his problem?" She loves to tell that story.

When it became clear that I was having real problems with my speech, I started daily speech therapy. I was only two or three at the time. When I was eight and nine, I had to have operations on my throat, on what is called the pharyngeal ?ap, to help me produce sound. The two procedures helped, but I think people still had trouble understanding me.

It was around this time that the Lab School sent me out to a psychiatrist or psychologist to have a look at me. I have no memory of the experience, but my parents sure do. After about six months, the woman called my parents in and basically told them that I was retarded. She'd done some tests, and she had determined that I was never going to be able to function as an adult in any meaningful way. Never graduate from high school, never even go to high school, never work or have a job or be married or have kids or any of the things you dream about. She told my parents they needed to put me in an institution in Maryland, where she had already reserved a spot for me.

I can't really imagine what my mom and dad felt like.

They wouldn't believe it, and they didn't tell me about it until much later. Luckily the Lab School didn't agree with this woman's assessment. They told my mom that the psychologist was wrong. I stayed there.

Just as I'd been dismissed as a lost cause by this therapist, my mom got a letter from Children's Hospital reporting that when I had had my open-heart surgery, I had gotten a blood transfusion. A bunch of the kids who had gotten blood transfusions at the time had since tested positive for HIV. My mom just about lost it again. The wait for the results of my HIV test was a week. My mom called the hospital so many times that they ?nally told her early.

When I was twelve, we went through the same thing again. Some kids who'd tested negative the ?rst time had turned up positive. I didn't sweat it all that much, but it wasn't pleasant. Sure helps put your problems into perspective.

I feel a little bad that I don't remember much of this, because I wish I could describe it to you better, like how I felt at a given time—with the surgeries, or the HIV tests. But truthfully, I don't even really remember being a little kid. I only remember it when I see pictures of birthday parties and holidays. So we just have to make do with what I've got, which is mostly hospitals and tests kind of on a loop. In my next life I'm going to have a photographic memory.

As you might guess, my mom remembers everything about my childhood, to this day. I thought this might be a good place to have you hear what she has to say about when I was little, because it's a different perspective. It shows you what the parents go through, too, and that the problems I had as a kid didn't only affect me:

I remember the ?rst seizure he had, in the front hall of our house. I didn't know what it was. I remember picking him up and the nanny got the car out of the garage, and I was standing on the front steps holding him, this completely lifeless, limp body. He had gone completely blue. His face had turned blue, his lips turned blue. And she pulled the car out front and I ran with his limp body and got in the backseat and just held him, held him all the way to the hospital.

And as he says here, he really was sick all the time, because he had and still does have a suppressed immune system. He couldn't have dental work or any invasive pro-cedure at all without antibiotics. And it also meant that if anything was going around, he'd get it ?rst and have it longer and have it worse than anybody else. He either had the ?u or pneumonia all the time.

In some ways, we were lucky that Quinn was diagnosed with learning disabilities so early in life, when he was only a little more than three. He got to the special schools early. A lot of kids only get there after they've been completely humiliated and degraded and teased and bullied beyond endurance, or made to feel stupid and lazy and hopeless and everything else. He never had that experience. I think that accounts for a lot of his con?dence.

And he was so brave as a kid, through all of his surgeries. He never cried when he had surgery, never showed any pain. Never cried. He would have to have blood tests all the time. I had a terrible experience in a hospital in Japan when I was young—I was there for almost a year—and so I basically faint when I get around needles.

So Quinn would walk in by himself. They had this great phlebotomist who took his blood, this wonderful black guy named Eddie. Quinn would sit in the chair and stick his arm out, and Eddie would say, "Hey, that's my man." And Quinn would have his blood taken. This went on for years.

When he was eight, he went to this therapist for six or eight months. Maybe six months. One day she called Ben and me and she said, Well, I'm sorry, but I have to tell you I've given Quinn a test. And the test showed that he is never going to be able to function as a normal adult in any way. You should know that he is going to be institutionalized, and he will never graduate from high school, he will never go to high school, he will certainly never go to college and he'll never be able to work or have a job or be married or have children or function in any kind of way. And, she says, I've taken the liberty of reserving a place for him in this institution out in Maryland, and I've talked to the Lab School, and they're all in agreement on this.

Total shock for us. Total shock. I mean, we couldn't walk out of there. It was the ?rst time I'd ever seen Ben just lose it. And now, we don't know a single parent of an LD [learning disabled] kid who hasn't at some point had some idiot tell them something like this. This is a constant, constant nightmare of LD parents, who have their children misdiagnosed by idiots. This woman was an idiot.

We drove right over to the Lab School, once we stopped crying, and we stormed in there and said, "What is this? Why do we have to hear it from this person that you've agreed that he should be institutionalized?" And they said, "We don't know what you're talking about. We've never had a conversation with this woman." I wanted to report her, but I didn't. It took us quite a while to get over it. I'm sure you can imagine.

The advice I would give to other families is therapy. I mean it. Immediately. It's helped me a lot in seeing that it wasn't my fault, that I didn't do anything wrong. I also think it's important because husbands and wives deal with it differently. You can ?nd statistics at Children's Hospital of parents who have a child who died, and the number who separate and divorce is unbelievable. It's not much less for people who have chronically ill children. The reason is that parents grieve differently. The mothers are all much more into it, much more open about their grief and their sadness and their depression. They want to talk about it and deal with it in the open. The men don't want to talk about it. They're often in denial. And that's true.