BABY GETS NEW HEART, MOM ON WAITING LIST.

Byline: DENNIS McCARTHY 

Little Maddie got a new heart Saturday. Now it's her mom's turn.

``She's going to be a tough act to follow,'' Andrea Baynes says. ``I'll have to be strong. Maddie's such a fighter.''

They both are. How else could you possibly get through something like this if you weren't a fighter?

How a healthy, 30-year-old mother and her 10-month-old baby girl could both need heart transplants at the same time was most likely the result of a virus enlarging Andrea's heart, causing cardiomyopathy - heart failure - doctors believe.

``It is highly unusual for a baby and a mother to need a heart transplant at the same time,'' says Karon Burch, pediatric heart transplant coordinator at UCLA Medical Center, where Maddie has been for 10 weeks waiting for a donor baby heart to become available.

Meanwhile, Andrea - who has had a defibrillator implanted, allowing her to remain out of the hospital to be with her baby now - has made the drive from her Simi Valley home to Westwood every day to be with Maddie.

``A mother's priority is always her child first,'' says sister-in-law Sherry Marshall. ``She wanted Maddie to get her heart first.

``She's been at that hospital every day, fighting for Maddie. Now it's time for Andrea to fight for herself.''

It was Friday afternoon, July 4, and Maddie had been sleeping all day, still running a fever.

Andrea decided to take a few hours off and drive home to watch the fireworks display at Simi High School with her husband, Ken, and their 4-year-old son, Brandon.

She kissed her baby goodbye, and promised to return later that night with Ken. It had been another bad day for Maddie, and Andrea wasn't sure how many more bad days her little body could take.

``After waiting 10 weeks, we were getting into a position where we expected to have a lot of problems soon,'' said Maddie's physician, Dr. Juan Alejos.

``Unless we got lucky and found a heart soon, the situation was deteriorating.''

No one knows for sure how it happened, but the virus theory is the best the experts have to go on.

``They think the virus crossed the placenta, going from my blood to hers,'' said Andrea, who was a nurse at Los Robles Regional Medical Center in Thousand Oaks before she was forced to stop working earlier this year.

``When Ken and I found out, we were devastated. How could it have happened?''

And now, on the Fourth of July, the Baynes family sat on the driveway of their home watching the fireworks display at the local high school - just three of them, instead of four.

With all the noise, they didn't hear the phone ringing inside their house.

``At 11 p.m., we left Brandon with a nanny and started to go back to the hospital to see Maddie,'' Andrea said. ``I called to tell them we were coming. That's when I found out they were trying to reach us.''

A heart had been found.

The only thing Andrea knows is the donor was a 2-year-old Seattle girl. Circumstances are confidential. Her heart was being transported to Van Nuys Airport by Learjet.

``Ken and I just started crying,'' Andrea said. ``We spent a few minutes with Maddie, then we went around hugging every person we could find.''

At 7 a.m., Ken and Andrea walked with Maddie as she was being wheeled into surgery. Then they went outside to get some fresh air.

``Ken hadn't slept since Thursday afternoon, and he was out on his feet,'' Andrea said of her husband, who has been working three jobs to make ends meet while the two women in his life wait for new hearts.

``As we were leaving the hospital, one of the nurses said they had just gotten the 10-minute call, meaning Maddie's new heart was almost here,'' she said.

Outside the hospital, Andrea and Ken watched a black limousine pull up in front of the emergency entrance, and the surgical team get out carrying a precious package.

``That's our baby's new heart,'' Ken said, crying and hugging his wife.

It had to be a good omen, didn't it? Maddie's new heart arriving first class in a big, black limo.

Six hours later, they found out it was. ``The doctors said her new heart took off like a race car,'' Andrea said, laughing. ``When we went in to see her, she squeezed our fingers.''

The first 48 hours or so are critical, and Monday afternoon Dr. Alejos said Maddie and her new heart were doing great together.

There are more babies and young children like Maddie at UCLA and other medical centers waiting for hearts, says Burch, the pediatric heart transplant coordinator.

``We do not have enough donor organs for our babies, and it's mainly an education issue,'' she says. ``Families don't know what to do at the time of a tragedy, which is why it is so important for families to talk about something like this before a tragedy.

``In the case of babies, obviously they can't say, 'Donate my organs if something happens.' It's up to the parents to talk about it.''

Dr. Alejos, who sees the pain and frustration of young parents with sick kids every day, thinks ``it's the greatest gift you can give.''

``You're giving life and new hope to a family,'' he said. ``What's better than that?''

Nothing, doc. Absolutely nothing.

And now, it's mom's turn.

The waiting list for a new heart for a person in Andrea's condition is two to three years, the doctors have told her. But it could be sooner if more people become educated about this wonderful gift they can give.

For more information on the organ donation program at UCLA, log on to www.healthcare.ucla.edu/transplant. Or call the medical center's toll-free information hotline, (800) UCLAMDI.

As for Andrea, she's determined to fight and be strong because, like she said, she's got a tough act to follow.

Dennis McCarthy, [phone]

dennis.mccarthy(at)dailynews.com

CAPTION(S):

photo

Photo:

(color) Ten-month-old Maddie got her new heart last weekend, but mom Andrea Baynes is still waiting for a donor heart as a defibrillator implanted in her chest keeps her heart beating.