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Born too soon: One dad's story of preemie twins

/ Source: The Associated Press

The speech I was holding should only have been a backup. I knew the words by heart because I'd lived them.

It was the story of my twin sons and how their birth 17 weeks too soon changed everything for me, my wife Lori and our 4-year-old son, Zac.

I'd given this speech plenty of times, but never to an audience like this — other parents of preemies.

We were at a national gathering of March of Dimes volunteers, and there were about 30 of us in a hotel ballroom for a session called "Every Baby Has A Story.'' Because I tell stories for a living as a sports writer for The Associated Press, I'd been asked to help run the meeting.

I started with some basic advice, like "make your story uniquely yours,'' and gave some dos and don'ts.

Eyes widened when I held up red and blue Beanie Babies that were as big as the real boys. Heads nodded when I held up my wedding band — which a dime can just fit through — and described it circling one baby's arm like a hula hoop.

Then I got to the middle of page 3. To the paragraph I'd typed through teary eyes a few days before.

"I'm sorry,'' I said, my jaw quivering, eyes puddling. I reached for a tissue, trying to stall long enough to regain my composure.

"This,'' I continued, "is the part where I always give the update ...''

I tried again. And again.

But I couldn't get the rest out.

Baby Zac's birth

Until the birth of our twins, life had been good to Lori and me.

I grew up in Houston, a sports-loving kid determined to become a sports writer. A gofer job at the Houston Post my senior year of high school led to bylines while at the University of Texas, then a job with the AP in Dallas. That fall, I met Lori at a Rosh Hashanah service. We married a few years later.

When we decided to try having kids, Lori got pregnant pretty quickly. Staying pregnant wasn't so easy.

Pre-term labor symptoms forced her to go on bed rest at 23 weeks. She delivered Zac at 36 weeks, a month early. The birth itself was rough. Lori needed blood transfusions and spent the night in intensive care.

Zac turned out fine. He weighed just 4 pounds, 12 ounces, but that was no big deal. I'm only 5-foot-5 and Lori is 5-even. We were always the smallest kids in our grades, so we thought nothing of it.

He was a preemie, but that seemed about as significant as being brown-haired or right-handed.

Baby A and Baby B

Once we were ready to make Zac a big brother, scar tissue from his traumatic arrival blocked the path to pregnancy.

After five operations and a failed in-vitro fertilization attempt, we decided to give IVF one last try. If it worked, great. If not, we'd happily raise Zac as an only child.

It worked — so well that two babies were created. But the initial sonogram signaled trouble.

"Baby A will probably be gone in a few days,'' our fertility doctor said. "I'm sorry.''

But the next sonogram, a few weeks later, showed two normal heartbeats.

Because of Zac's early arrival, and because twins tend to come early, doctors watched Lori's pregnancy closely. Sure enough, her body began getting ready to deliver after only 17 weeks. She was back on bed rest, but not long enough.

I was covering an NBA playoff game in Dallas when a message popped up on my laptop.

"call lori asap''

Her water broke. Her sister, Tina, was taking her to the hospital.

Leaving everything courtside, I ran to my car through drenching rain. I crunched over orange cones to get out of the parking lot, racing to Medical City Hospital.

Lori was put in a delivery-room bed tilted backward to let gravity help keep the babies in, and an IV dripped magnesium sulfate — a "mag bag'' — to slow labor.

Only 23 weeks into what's supposed to be 40 weeks of gestation, the boys were "on the brink of viability,'' a doctor said. Even if they made it, their lungs, brains, eyes and ears were so underdeveloped, they might never work right.

The next day, neonatologist Dr. Eileen Milvenan sat down to go over the grim prognosis.

She emphasized her points by reading statistics on a folded card. We didn't need to hear the numbers. Her voice and look showed this was someone who'd seen more sad endings than happy ones, and she feared we'd be another.

Baby A was in jeopardy again. His water bag had ripped, depriving him of the amniotic fluid that's vital to development. No matter what, he was coming out soon. Baby B, meanwhile, was doing fine, his water bag still intact.

Doctors gave us three options: Focus on saving Baby A, focus on Baby B, or — their recommendation — "delayed delivery,'' having Baby A when necessary, then stopping the birth process and keeping Baby B inside as long as possible.

"We have to do what's best for both of them,'' Lori kept saying.

We refused to pick between our unborn children. Delayed delivery became the only choice.

Having a game plan was comforting — Baby A in days, Baby B in weeks, we hoped. Then it dawned on us: Twins? With birthdays so far apart?

It was the first time we'd laughed in days.

‘What's best for you’

Lori coughed all night. By morning, her skin looked green, her face puffy.

"It feels like encyclopedias are piled on my chest,'' she told her obstetrician, Dr. Kathryn Waldrep.

Dr. Waldrep listened through her stethoscope. Septic fluid was pooling in Lori's lungs, caused by a combination of the mag bag and the tilted bed; our two biggest allies fighting off labor had turned against us.

"We have to take the babies now,'' Dr. Waldrep said. "You are my patient, not them. I have to do what's best for you.''

In an instant, the solace of last night's plan disintegrated. As Lori went to get a catheter in her neck, I put on a blue paper gown and hat, and scrubbed my arms. When I joined Lori in the operating room, she was in a drugged stupor.

The boys came out 2 minutes apart. Nobody stopped to show them to me. There was no time.

Two teams of neonatal nurses sprung to action.

I locked in on Baby A — or, rather, the nurse working on him. She squeezed a green oxygen bag, then paused, waiting to see if the air would kick-start his underdeveloped lungs.

She squeezed again. Still nothing.

Things were going just as poorly for Baby B.

Each minute the babies didn't breathe lowered their chance of surviving.

Of the 4 million births in the U.S. that year, 2002, just 9,510 babies were born before 24 weeks gestation. Nearly half in our boys' weight range (500-749 grams) died; the rate was above 53 percent for twins. Even if they lived, this lack of oxygen made them more likely to become disabled.

These were all the horrible things Dr. Milvenan had talked about the day before. Now, she was walking to me.

"Should we keep trying?'' she said.

This was not one of the scenarios we'd discussed.

"Hell, yes!'' I blurted. Saying no would've meant death, and I wasn't giving up that easily.

But ... what if I'd just sentenced our boys to a lifetime of suffering?

We'd never talked about raising a disabled child, certainly not two. I never brought it up because it scared me. Lori had majored in special education in college, working in classrooms with physically and mentally challenged kids — but this was our family, not a school.

Finally, in his 10th minute, Baby A pinked up. Baby B showed that beautiful color 2 minutes later.

As they were being whisked downstairs to the Neonatal Intensive Care Unit, I couldn't stop staring.

The boys were so tiny, like newly hatched birds, with their eyes fused shut and their skin a creepy, shiny, almost translucent color.

But perfect.

It was as if someone had taken Zac, small as he was at birth, and copied him at a 25 percent setting.

OK under the circumstances

In the NICU, there were monitors to attach, ventilators to start, blood and X-rays to be taken.

And the green oxygen bags came out again.

In the ICU, Lori was still unconscious but OK under the circumstances, doctors said.

On another floor, our family was waiting.

My dad, Lori's parents and her siblings already knew a little. They'd been in the hall outside the operating room and caught a glimpse of the babies. "Like minnows,'' my father muttered.

I told them everything I knew. Their questions made me realize how much I didn't: What are their chances of living? What's being done to them now? And just how small are they?

Then there was another question.

"How are you doing?'' Lori's mom asked me.

Stopping to think about it for the first time, I wept.

Crash course

Dr. Milvenan clipped X-rays of the boys' lungs to a lighted screen on a NICU wall, then began my crash course in neonatology.

"See how white everything is?'' she said. "It's supposed to be dark.''

Our boys were born before their bodies produced a substance called surfactant, which makes it easier for lungs to open and close. They were given an artificial version during delivery, but it would take time to know whether they'd ever be able to inhale, process oxygen and exhale on their own. That is, if the ventilators didn't rip apart their lungs first.

Bleeding in the brain is the other big fear. Babies born this small, this early, strain for each breath — hard enough to rupture blood vessels in the brain. It's usually a question of how many, not if. That test, however, would have to wait about a week.

Their fused eyes eventually would open, but it'd take months to know if they work. Ditto for the ears. And other body parts.

If the boys cleared all those hurdles, another obstacle course awaited. It was filled with conditions they were at high risk for — cerebral palsy, cystic fibrosis, muscular dystrophy ... so many that I lumped them together as "things they have telethons for.''

It all boiled down to this: Could these 1-pound, 2-ounce babies develop "in the real world'' like nature intended them to do in the womb?

Choosing names

On Monday, the boys' third day, the ID cards above their incubators still read "Aron Twin A'' and "Aron Twin B.''

They needed names.

In our families, babies are usually named for a deceased relative. But the boys arrived before we'd picked anyone to honor.

We talked about it briefly in the ICU, when Lori regained consciousness and learned that both boys were alive. We decided to follow a theme: Biblical warriors who overcame long odds.

Rabbi Debra Robbins visited and helped us narrow our list. She also taught us about the concept of renaming babies. Previous generations did this when a child became frighteningly ill, as a way to "trick the angel of death.''

Most of all, she urged us to make a choice.

"The caregivers need names to feel a more personal connection to the babies,'' she said.

We chose Jacob Benjamin and Joshua Caleb.

Jake and Josh.

Bracing for the worst

By Tuesday, Dr. Clair Schwendeman, who usually ran the NICU, was back. With wavy dark hair, a thick beard and a small diamond stud earring, he carried himself like the boss. He also had a great way of explaining things, starting with technical terms, then dumbing it down until I caught on.

Our first big discussion was about everyone being born with a hole in their heart. It closes within 72 hours for most babies. But 23-weekers aren't always that lucky.

Jake's hole was starting to close. Dr. Schwendeman recommended giving him medicine to help speed things up, and we agreed.

Josh's hole was wide open. He needed surgery.

Heart surgery. On this tiny baby.

Jarring as it seemed, everyone told us this operation was routine. They were right. The surgery was Wednesday morning and it went perfectly.

The next morning, I didn't like the way Jake looked. By afternoon, his tummy was swelling and turning purple. At 10 p.m., the color was higher on his chest, higher still at 2 a.m.

He was bleeding internally.

The obvious place to look first was his heart. Nope, that hole was closed.

About an hour later, Dr. Schwendeman came to Lori's room. The problem was in Jake's small intestine, likely caused by the medicine he'd been given to close the hole in his heart. It's the most common stomach problem for babies born so small — and it claims about 1 in 7 who develop it this soon.

A surgeon was on the way.

"If there's only one dead spot, they can cut around it and patch it together, like fixing a garden hose,'' Dr. Schwendeman said. "But if there's more than one hole, there's nothing they can do.''

So on the first Friday of Jake's life, we went to tell him goodbye.

Tricking the angel of death

The day we arrived in the NICU I learned about "compassion care,'' a gentle way of preparing baby and family for death. Nobody said so, but I could tell we were going through the early stages.

All week, we had to sneak a hand into the incubators to touch the boys; now, touching was being encouraged. Dr. Schwendeman also waived the one-visitor rule, letting our family join us in groups of two.

What could our parents say to their dying, 6-day-old grandson? There were whispers of faith, hope and love, messages intended for Lori and me as much as Jake.

We drifted to Josh's incubator. Would he ever get to know his twin?

Nurses urged us to take lots of pictures of Jake. Someone recommended putting my wedding band on his hand to show how small he was. It went over his knuckles with ease. His arms — even his legs — were hardly thicker than a pencil.

Then the surgeon showed up, a tall, white-haired man named Dr. William Dammert, clutching a wooden box the size of a small lunch box filled with his tools.

Given one last moment with Jake, Lori and I talked about what a fighter he was, ever since that first sonogram.

"At least we had him for a week,'' I said. "No matter how the surgery goes, he'll be better off either way.''

Just then, Jake's arm jerked — almost like a punch.

Lori saw it as a sign. Through held-back tears, she showed a hint of a smile.

There was only one thing left to do.

Jake needed a new name. To trick the angel of death.

We changed his Hebrew name from "Ya'akov'' to "Chaim.'' We chose it for its English translation:


Cause for celebration

The anesthesiologist warned us that if someone returned in a half hour or less, it was bad news. Over an hour meant they were working to save him.

Right around 50 minutes, in walked Dr. Dammert.

"It was the best-case scenario,'' he said.

Talk about joy! Relief. Our little fighter did it!

The following weeks remained tense, with more bad days than good. But our ride on the preemie parents' roller-coaster had more side-to-side jarring than 90-degree drops.

Among the biggest concerns was chronic lung disease, a term that conjured images of a little boy staring out a window, unable to play outside. Dr. Schwendeman assured me it was nothing like that.

"They can grow out of this,'' he said.

On their 1-month birthday, each boy weighed 1 pound, 8 ounces, up 6 ounces from their birthweight — yet they were still considered "micro preemies.'' Their feedings were being increased, but they were still getting less than a teaspoon per hour.

The biggest medical news was that their brain scans showed hardly any bleeding.

To us, it meant another dodged bullet. To the caregivers, it meant more. It was further proof these guys weren't typical; they might be odds-defying exceptions.

Prayers around the world

On May 31, I sent an e-mail called "Jake & Josh Aron — the full story'' to about 80 friends and relatives.

The responses overwhelmed us.

Several people wanted to donate blood in the boys' honor. Others offered advice or just comforting words. And then there were the prayers.

"I've asked my mother to put the boys, you and Lori and Zac on her prayer list,'' a colleague wrote. "Her connections with God are a little better than mine, and I figured the boys could use as many prayers and good thoughts as possible.''

Prayer list? We didn't even know such things existed. Within days, the boys were on lists at synagogues and churches all over the country. My favorite was a fifth-grade class in Kansas City. Those kids were praying for another set of twins in our NICU, the grandchildren of their former teacher; she visited the class and urged them to pray for Jake and Josh, too.

Every e-mail update brought out the best in people.

A lifelong friend facing open-heart surgery called to let us know the twins helped give him courage. A college pal living in Tel Aviv drove to Jerusalem to take part in a centuries-old rite of faith at the Western Wall. Between the rocks, he slipped a piece of paper with these words he'd written:

"Please, God, help Jacob Benjamin Aron and Joshua Caleb Aron overcome the challenges of early birth. Please help them live long and full lives, surrounded by the love of their parents, Lori and Jaime, their brother Zachary, and, ultimately, their own children. Please answer the prayers of all the family and friends who want to see these boys grow up strong and healthy. Thank you.''

To be continued...