I've always called her the Doodleberry.

But now it's time to tell the truth.

Her name is Jordie.

She's my baby.   She's 9.   She's all you could ask for in a child - sweet, smart, beautiful.

And we didn't always know if we would get to keep her.

But we did.

Jordan Sara Newmark is the St. Louis Heart Association's 1993 Heart Child.   Obviously, this is not exactly the kind of honor you wish for your child - you wish she had never been in the running for it in the first place.

But the main thing to remember - and the reason my husband and I decided to let her be the Heart Child - is that this story has a happy ending.

We want everybody who is just at the beginning of their own stories like this to know that most of the time, that's how it works out.

Today, Jordie is not only healthy, she's also athletic, a prize-winning gymnast.   She loves her ballet and acrobatics classes, and I love to watch her, dressed in her sleek little unitard, spinning and jumping through her latest routine.

She's fine.

You can believe your eyes.

Jordie was born at Jewish Hospital on Aug. 2, 1983, at 11:32 p.m.   I had had a perfectly normal pregnancy and labor.   She was a beautiful baby, pink as a seashell, with dainty fingers, a rosebud mouth and a tiny dusting of blond hair like sugar on a cookie.

Early the next morning the pediatrician, Nancy Holmes, came into my room while I was eating breakfast.

"So," I asked, "is she perfect?"

"Well," said the pediatrician.

Imagine a huge black pit.   Imagine hurlting down it, with nothing to break your fall and no bottom in sight.

Imagine me, at that moment.

The baby has a heart murmur, the doctor said.   She told me not to overreact- lot of babies have heart murmurs for lots of different reasons, most of them fairly minor.   But since St. Louis Children's Hospital was, literally, right around the corner, why not have a pediatric cardiologist take a look?

Of course, I said from the bottom of the pit.   I could practically hear the echo.

Dr. Antonio Hernandez was a wonderful man, gentle and smart.   He put things simply.   Look, he told us, her color is good - pink, not blue.   Look at how well she eats, another strong sign.   (He was in a good position to evaluate this, since he conducted virtually the entire first examination with the baby at my breast, to keep her calm.   You might think that I, a brand-new mother, would have been embarrassed.   No.   When you are worried about your baby, embarrassment turns out to be an entirely superfluous emotion.)

Over the next weeks, the cardiologists at Children's did a lot of different tests to find out what was causing the murmur.   There are many kinds of heart problems - heart abnormalities are the single-most common birth defect - and the doctors need to know what they are dealing with to treat it right.

I was immensely grateful that Children's allows parents to be present for nearly every procedure.   It surprised us, but neither my husband, Mike, nor I ever felt queasy during the tests.   Can you look at your own child's blood?   Yes, it turns out, you can, if the alternative is not being there to look at it and thinking of your baby, frightened, seeking comfort in somebody else's arms.

The biggest test, performed when Jordie was 3 months old, was an exploratory operation called a cardiac catheterization.

In this procedure, the doctors cut into the groin to run a tube into the heart.   Then they put a dye into the tube.   Tracing its illuminated path, they can get a very good picture of what is wrong inside the heart.   They also draw out blood to analyze it.

A lot of people with heart problems have a cardiac catheterization.   Very few of them, however, are 3 months old.   This makes it harder on the doctors.   They are not the only ones.

The cardiac catheterization seemed to me and Mike to take all day. nbsp Actually, it was more like an hour.   But it was the first time that we were not permitted to be with Jordie during a procedure.

Afterwards, Tony Hernandez met with us in a little room.

"We can fix it," he said.

That is the sum total of what I got out of that conversation.

Later, when I was calm, I made him explain everything all over again.

Jordie had been born with a fairly rare disorder called tetralogy of Fallot.   About one in 1,500 to 2,000 children is born with it.   Fallot is named for the scientist who first described it, in the 19th century; tetralogy from tetra, the Greek word for four.

Four signs characterize this disorder.   Two are of no real significance: Theaorta, the big artery that comes out of the heart, is shifted to the right instead of left, and the right side of the heart is thicker than it should be.

The other two parts, though, are potentially lethal. There is a hole between the two lower chambers of the heart.   Also, the opening of the pulmonary valve is too small.   That is what causes the murmur.

Together, these two defects force some blood to go the wrong way, from right to left.   That causes low oxygen in the blood, creating a blue look. nbsp Eventually, the oxygen level becomes too low to support life.

That is, without surgery.

Before the surgery was developed, the mortality rate for children with Fallot's tetralogy was 95 percent by age 15 - usually by age 5.

But in 1944, pioneer heart doctors Alfred Blalock and Helen Taussig at Johns Hopkins developed the first of the "blue baby" operations.   Over the decades, their procedures were refined by others.

That's why Tony said, "We can fix it."

All right, Mike and I agreed instantly - go ahead.

Not so fast, said the doctor.

He explained that, although doctors can perform heart surgery on newborns if need be, they prefer to wait as long as possible to give the heart a chance to grow.   (The smaller the heart, the more difficult the operation.   An adult heart is about the size of an orange.   A newborn's heart is about the size of a walnut.)   As long as Jordie was doing well, they wouldn't operate.

In time, though, she would do less well.   She wouldn't gain weight. nbsp She would tire easily, and squat a lot, a position that changes the blood flow pattern and one that all children with Fallot's tetralogy inevitably learn.   Her color would change; she would look blue.

How blue?

"Do you know Picasso?" Tony asked us.

He also told us that sooner or later, she would have a "tet spell," a fainting spell with blueness.   That would be the sign that it was time to operate.   "She will have one spell,"he told us, "but we will not let her have two."

The hardest part was that we had no idea when any of this would happen.   Nobody did. Jordie kept growing, right on schedule, cooing and crawling, talking and walking.   She was adorable.

I was a wreck.

I felt like there was a cloud over me all the time.   No matter what else I was doing, part of me was worrying about Jordie's heart.

I kept notes for the doctors.   Figuring that I didn't know what might be important, I wrote everything down.   It was comprehensive and completely illegible, but it made me feel better.   I also called a lot; there was a period when I called the pediatrician every single day.   Sometimes I had a real question; plenty of times I didn't.   But Nancy Holmes, the pediatrician, always took my calls and answered patiently.   She never made me feel stupid.

But I was starting to feel stupid to myself.   I was so anxious, I was letting myself lose the joy of Jordie's babyhood to a shadow of fear.

Finally, I just made up my mind not to let that happen.   I willed myself to believe everything I was told.   Tony Hernandez said they could fix it; that meant they could fix it.   Funny as it sounds, I forced myself to relax.   This was the only time Jordie would ever be a baby, and I was determined to savor every minute of it.

Well, that was my goal.   Needless to say I did not always achieve it.   Three a.m. was a particularly unsuccessful time.

To get through the rough spots, I made up a little mental exercise.   I would concentrate on something that would happen in the future, some event that would take place in Jordie's life when all this was a distant memory.

For example, I thought a lot about her first day of school.   What would she wear?   Eventually, I decided: a sailor dress.

Let me tell you something wonderful: When that first day of school came, that's just what she did wear, crisp blue and white cotton with bright red trim.

In fact, nearly everything I imagined at 3 a.m. has come to pass.

Though I never could have dreamed up the unitards.

When she was 14 months old, Jordie had the tet spell, just as Tony told us she would.   It happened on a Wednesday night.   We went straight to the hospital.

Dr. Thomas Spray performed the surgery Friday morning.

Six days later, we were back home.

Jordie still has checkups, of course.   Tony Hernandez had a heart attack and died in 1986; her doctor since then has been the chief of cardiology at Children's, Arnold Strauss.

One time, after a checkup, I told Arnie that even though he kept assuring me that things were OK, I still worried.

I'll never forget what he told me: "You can believe your eyes."

I think that's the single best piece of advice anybody ever gave me, not just for taking care of Jordie but for raising both our daughters.   (Jordie's little sister, Eden, was born in 1986.   Her heart is fine.)   To tell the truth, I don't think I've ever had any better advice on how to live life in general.

Jordie's in third grade now.   Her favorite subject is creative writing; her least favorite is math.   She loves cats (she has one), dogs (she has one) and horses (she doesn't have one and it's because we don't understand).   She uses her special pink pencil to write in her diary.   She falls asleep hugging my old stuffed panda, and wakes up every morning bursting with energy.

What did I tell you - she's a wonderful kid.

You can believe your eyes.

Copyright 1992 St. Louis Post-Dispatch, Inc.

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