The Littrells Open Up About Baylee's Kawasaki Disease

04/01/2009 at 05:00 PM ET

It was a happy rite of passage for Baylee Littrell: His first tooth wiggled free in late February after a fried chicken dinner at the Johnboy’s Home Cooking restaurant near his home in Atlanta. “The tooth fairy came!” Baylee says proudly. “He brought me a dollar.”

At age 6, Baylee has had to endure much scarier milestones. Two months earlier the son of Backstreet Boy Brian Littrell and his wife, Leighanne, an accessories designer, was hospitalized after a series of symptoms — high fevers, full-body rash, swollen lymph nodes, and blisters that coated his throat — tortured his little body.

The diagnosis: atypical Kawasaki Disease, an inflammation of the blood vessels that in extreme cases can lead to aneurysms and sudden death. Says Brian: “We didn’t know what we were dealing with until we found his coronary artery three times the size it should be.”

Mark Leibowitz for PEOPLE for use on CBB

It took doctors almost two nerve-racking weeks to correctly diagnose Baylee. “You feel helpless as a parent because you’re relying on people who are educated about these things,” says Brian, 34, of the frustration he and his wife of eight years felt as doctors tested for, then eventually ruled out, strep throat, hand, foot and mouth disease, and an allergic reaction to antibiotics.

Although Baylee was traumatized by the needles and tests, he remained in good spirits, which comforted his parents. “He got a sponge bath, and he goes, ‘This is the life!’ He was amazing,” says Leighanne, 39. But “I knew there was something really wrong.” So she spent hours online researching her son’s symptoms and even suggested to doctors that it might be KD. (John Travolta‘s son Jett, who died at 16 following a seizure, had the disease as a child.)

But that too was initially ruled out because Baylee’s case wasn’t typical. “Everybody doesn’t come in with textbook symptoms,” explains family friend and pediatrician Greg Cabrera, one of eight doctors who worked on the case. “Baylee didn’t fit all the criteria. It was very, very difficult.”

To read how atypical Kawasaki Disease was diagnosed and to see another photo, click below.

Mark Leibowitz for PEOPLE for use on CBB

The Littrells were also worried about what Baylee called “heart strikes,” occasional electrical feelings in his chest.

(Brian could relate: He was born with a heart murmur and underwent open-heart surgery at 23; he later founded the charity Healthy Heart Club for Kids.)

They insisted that doctors at Children’s Healthcare of Atlanta at Scottish Rite hospital perform an echocardiogram — an ultrasound of Baylee’s heart — which solved the mystery and may ultimately have saved his life.

“Without the echo they were going home that day,” says Cabrera. “It stopped everybody in their tracks.” (In a follow-up visit, the Littrells say Baylee’s cardiologist told them the chest sensations Baylee still feels are unrelated to KD.)

Immediately Baylee began the standard treatment of a 12-hour course of IVIG, a medication designed to reduce arterial inflammation.

He was sent home less than two days later with orders to rest and take aspirin to prevent clotting, and just a week later, tests showed his coronary artery had already started to shrink.

Seven weeks later it was even smaller. “Baylee’s cardiologist thinks he’s going to make a full recovery and be able to do whatever he wants,” says Cabrera.

These days that means school (he’s taught at home), karate (he’s now an orange belt) and entertaining guests with his impersonation of TV mega-minister Joel Osteen. Aside from tiring more easily, “Baylee is pretty much back to normal,” says his dad. “It’s been an emotional roller coaster. Fans all over the world were praying for Baylee. We felt that love.”

Meanwhile the Littrells hope other parents can learn from their experience. “Never give up,” Brian says. “Doctors are not always right, but they are there to help. Be an advocate for your child.” Adds Leighanne, “I don’t know how we could love him any more, but we do. Every day is a gift.”

Source: PEOPLE, April 6th issue

What is Kawasaki Disease? The condition, named for the doctor who first described it in 1967, causes inflammation of blood vessels, including the coronary arteries. It has no known cause and is diagnosed in about 4,000 Americans a year (usually boys ages 2 to 5 and children of Asian descent). Symptoms include fever over 102 degrees for more than five days, rash, red eyes and mouth, and swollen lymph nodes.

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Showing 18 comments

Christina Bledsoe on

That’s terrible 😦

meghan on

One dollar. Score!!:)

I can’t even imagine the fears that Brian and Leighanne must have been feeling, waiting for answers. I’m glad to hear that things are getting better for the family.

Jennifer on

I can’t imagine what a difficult time that was for them. I’m glad to hear that all is going much better for them now.

They are a beautiful family, and Baylee is such a handsome little guy!

Jenifer on

How scary for them! My friend’s son has Kawasaki Disease last year and it was a frightening time in the beginning.

CC on

My son got kawasaki’s November of last year and the only thing that kept me sane was knowing that
the doctor’s knew what was wrong with him and they could fix him.
I can’t even imagine the agony this family went through waiting to know what was wrong. So happy that it worked out OK

Jeni on

I’m so glad little Baylee is doing okay. Shows you that a parents instinct should be taken into consideration.

Such a beautiful family. Baylee is like a perfect mix of both his mom and dad. I can see both of them so clearly in him. He’s adorable.

Janet on

That’s a great picture of them! When I saw it the BSB song, “As Long As You Love Me” played in my head. Good to know Baylee’s fine (I know of 2 kids who had this disease and fully recovered and have gone on to be healthy elementary kids). This has got to be nerve racking yet it’s comforting to know that doctors know how to treat it.

Crystle on

I am so glad that Baylee is doing 100% better

Skipsie on

It’s so fantastic to hear Baylee’s doing better, and to hear how brave he was in the hospital (sponge bath: “this is the life” lol)
That first photograph is definatly a keeper!

Amy on

I think they’re making it sound rarer than it actually is. In 1998 when my 2 1/2 year old nephew had it no one had heard of it. Now a days it seems like every other little boy has had it.

Stephany on

What a beautiful family and what a sad story that has a happy ending. I really hope everything works out for them and Baylee can go on to lead a healthy life!

Rachel on

What a beautiful family! I love Baylee’s bedroom :O)

I simply cannot imagine how scary that had to have been for their family — especially knowing Brian almost died of a heart condition when he was that age. And I don’t think they are trying to make it sound like a “rare” disease… in fact I think they’re doing just the opposite. They are bringing into better light a disease that is out there every single day, that can often have devastating effects when doctors miss the diagnosis. It’s like an article about a child with leukemia where the parents warn others about the symptoms their doctors thought at first were cold and flu and normal childhood bumps and bruises. Just because a disease isn’t “rare” doesn’t mean that people shouldn’t be aware.

niman on

Brian and Leighanne we are happy to know that finally little Baylee is doing ok and better.
we thought about you when we heard about the news.
we wish you all the best, in health and everything.

niman israel

Kevin on

I hope the little tyke’s gonna be okay.

Backstreet Diva on

We’re all with the Littrells!! We’ll never stop praying for their health and happiness!!

Brian, if you read this someday… you gotta know that I’m a big fan of you and I always pray for you… You’ve done a lot for me, even if you didn’t know it…

Love ya!

Alex on

Too bad they don’t have any more kids.

CelebBabyLover on

Amy- Bailey’s Kawaski Diease was Atypical Kawaski Diease, which, I believe, IS fairly rare. “Regular” Kawaski diease probably is more common.

ChemE on

It’s the friction from bare feet on rubber mats during karate generating up to 25,000 volts that triggers the strong immune response and Kawasaki disease. It is an electrical problem due to triboelectric effects