My name is Kenny. I have a big red nose. It's not my fault; I was born with it. For a long time, I didn't even know my nose looked different: I was too small to look in the mirror, and I couldn't understand the questions that strangers asked Mommy and Daddy. Now that I'm 5, I'm old enough to notice people staring at me. I know when kids are laughing or whispering things about my nose that aren't nice.
At first, the doctors didn't know what was wrong with my nose. One said it was a type of birthmark called a port-wine stain. Others said it was something a laser could fix. I got more than ten laser treatments when I was a baby, but they didn't work. We live in Wyckoff, New Jersey, but Mommy and Daddy were willing to go anywhere to get help for me.
Finally, we found Dr. B, a special doctor in New York City. People come to see him from all over the world--some even by helicopter! Whenever I see Dr. B, there are always other doctors in the room. They take pictures or place a special microphone on my nose to listen to the blood flowing through it.
Mommy says to call my red nose a birthmark because it's easier for other kids to understand. But Dr. B says I have something deep under my skin called an AVM. My nose is red and swollen because of all the blood that collects inside.
I get lots of nosebleeds, but I'm used to them. Mommy taught me how to hold the gauze all by myself. Dr. B told us that AVMs usually don't grow--but mine does. He says, "Kenny, your nose continues to puzzle me."
When I'm a teenager and my nose is all grown, my doctors might make me a new one. But for now, the only way to treat my nose is to "embolize" it. I don't know exactly what that means, but I know it means going to the hospital. Seems like I've been there a hundred times! Mommy always tells me two days before we have to go, so I can start packing my favorite things. I still get sad, though.
I don't like the silver table in the scary room with the big machines. I don't like that mask they put on my face to put me to sleep, even with the grape Chap Stick they rub on the edges to make it smell good. I don't like the needle they stick in my hand and arm. I don't like the cuff on my arm that gets really tight every ten minutes and wakes me up at night. Most of all, I don't like that scratchy blue ID bracelet they make me wear. One time, a nurse put a bracelet on my stuffed dog, Duke, and pretended it was his new collar. I cried really hard and made her take it off.
After surgery, I stay in intensive care for a few days so the nurses can watch me real close. Then I get to move to "the floor," where the other kids stay. When I'm well enough to go to the playroom, I'm almost ready to go home. Some kids there are in wheelchairs. Most have lots of bandages. A few don't have any hair, and you can see scars on their heads from operations on their brains. No one looks at my nose funny in the playroom. There, I'm just Kenny.
My big brother, Robbie, and I usually do everything together. He's 6. I know he feels left out when I go to the hospital. It's funny--he thinks he's missing out on whatever I'm doing in New York, and I think I'm missing out on whatever he's doing back at home.
Robbie always protects me from kids who tease me. My little brother, Danny, who's 2, doesn't know there's anything wrong with my nose. Robbie sometimes jokes around and calls me "Funny Face." My preschool teacher told Mommy that maybe Robbie calls me that so other kids won't have a chance to call me something meaner.
Mommy always tells us that it's not nice to stare. She says people don't mean to--they're just curious about why my nose is so big and red. She says it's okay to tell kids it hurts my feelings when they make fun of me.
Dr. B says I'm special. But I don't see anything so special about having a nose that's bigger and redder than every other kid's. I think I'm pretty much the same as any kid my age. I play with trucks and trains. I dress up in my firefighter uniform and pretend to put out fires. I like when Daddy pushes me high on the swings at the park.
Another thing I really love is the circus. Once, some girls behind us put on clown noses they'd bought. I turned around and told them proudly, "I don't have to buy a clown nose because my nose is already red!"
When Mommy lies in bed with me before I fall asleep, we do the same things every night:
We scrunch up under the covers.
We read a book.
We talk about my day.
We say that everything is going to be okay with my nose.
Our son Kenny was 15 months old when we finally found out that he had a rare vascular condition called an arteriovenous malformation. An AVM is a tangle of abnormally connected arteries and veins. Arteries (which carry blood away from the heart) and veins (which carry blood back to the heart) are usually connected by tiny capillaries, which slow down the blood flow. In an AVM, however, no capillaries link these two types of blood vessels. As a result, the vessels become dilated with blood-and that makes Kenny's nose look red and bulbous. AVMs are most commonly found in the spine and brain, where they can cause strokes, but a small number of children are born with facial AVMs.
AVMs are unpredictable and difficult to treat. To control bleeding and prevent permanent damage to the underlying tissue and bone, it's critical to limit blood flow to the AVM. Every four to six months, we take Kenny to have a surgical procedure called embolization. Dr. Alejandro Berenstein (Kenny calls him Dr. B), director of endovascular surgery at the Institute for Neurology and Neurosurgery at Beth Israel Medical Center, in New York City, threads a thin catheter into an artery in Kenny's groin and advances it to the arteries that supply the AVM. Then he injects glue or alcohol into the vessels to seal them off, temporarily diverting blood from the AVM. Dr. B says that Kenny's case has been particularly challenging to treat: After an embolization, other arteries from nearby areas in his nose often start to feed the AVM, causing the vessels to refill.
Although removing most of Kenny's nose and building an artificial one would dramatically improve his appearance, he probably won't be able to have this procedure until he is between 15 and 17, when his face is fully developed. If reconstruction is performed too early, the new skin may not stretch as he grows. In the meantime, we try to help Kenny deal with his AVM as best we can-and we enjoy every day with our delightful and brave little boy.
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Copyright © 2002 Debbie Breslow. Reprinted with permission from the September 2002 issue of Parents Magazine.