Friday, September 7, 2012

ROCHESTER, Minn. — Christina DeShaw rolled past the glass doors with the babies and their bad hearts and their tubes and wires and blinking lights.

Down farther, in the corner room, was the little girl she had waited so long to touch.

Ava Grace.

Christina and her husband Brad had tried for years to get pregnant. Now they have two new babies. A boy and a girl. But the parents’ struggle to keep them will go on.

Ava has half of a heart. A surgeon cut open her heart not long after she was born here at Mayo Clinic in May — the first of three surgeries to help her cope with the abnormality. If all goes to plan in the next two years, Ava might live a normal life. But there’s still so much to do.

Brad wheeled Christina down the hall. She was still hurting from where the doctors cut open her abdomen to pull out Ava and her brother Aidan. They couldn’t let Christina go into labor on her own for fear the stress would be too much for her little girl.

The doctors and nurses had tried to prepare Christina for this moment. Months ago, they showed her a doll with a breathing tube down its throat and a plastic brace on its face and all of those tubes and wires, and Christina cried.

Brad wheeled her close. Christina couldn’t breathe.

She saw all of the machines with green screens and the wires and tubes — so many tubes that fell from Ava’s tiny body.

How many times have
needles poked her skin? Christina thought as tears streamed her cheeks and Ava lay alone — so small — in the hospital bed. Does she hurt right now?

Christina sobbed. She reached for Ava’s foot and vowed to never let go.

A Mercy Medical Center technician in Des Moines squirted cold jelly on Christina’s pregnant belly in January and dragged an ultrasound probe back and forth to look inside.

The technician used the machine to measure the twins’ bones and organs to be sure they were developing right. Femurs and heads, hearts and others.

Christina and husband Brad Weitl grew up in Carroll — she’s a 1994 Carroll High graduate; he’s a 1995 Kuemper Catholic alum — but they first met several years after when Christina returned from a Massachusetts college. Brad farmed and worked a construction job in the area and struck up a conversation with Christina at a bar one night, where they both had gone with friends.

After another few chance meetings Christina gave Brad her phone number, and they later married in 2002 at Holy Spirit Church.

They prayed for children but struggled to get pregnant until last year. They feared that each hospital checkup since would bring bad news.

But in this darkened room at the Des Moines hospital, Christina and Brad were nearly halfway there. Their first-time parent fears had mostly faded.

Then something didn’t seem right. Christina saw that the technician kept looking at one of the twins’ hearts. The room grew quiet and cold. The technician and her student gave each other a few unspoken glances and moved on.

“Is everything OK?”

Signs of trouble

“There’s a problem with her heart,” a doctor told them a short time later. “It looks like a heart defect.”

His words grew cloudy and jumbled, and Christina felt as if she were lifted from the room. Everything seemed so distant. She couldn’t understand.

But the images were clear.

Ava and Aidan’s hearts were so different. The left side of Ava’s heart was ... just ... gone.

Brad grabbed Christina’s hand, and they cried and thought about how their lives would change.

Christina tried to go back to work that day, to her manager job at ING Financial Services in downtown Des Moines. She sobbed in her car all the way and pulled into a large parking ramp and sat for 20 minutes. She couldn’t go back.

Having faith

Brad and Christina named their unborn babies — and furnished a nursery with “Ava Grace” and “Aidan Paul” in big cursive letters on the
wall — even though they were less than halfway through the pregnancy and their girl could die in the days that followed her birth.

Christina worried that the nursery would be a painful reminder if things went wrong, but they needed faith, they said, to survive this rare disease with its long name:

Hypoplastic left heart syndrome.

It means the left side of Ava’s heart is severely underdeveloped.

Parents-to-be respond to the diagnosis in different ways, said Dr. Ben Eidem, Ava’s heart doctor at Mayo.

Some deny. Some are fearful. Some are quiet and pessimistic. But Ava’s parents are optimists. They have plans for the little girl they had waited so long to touch.

So Eidem told Christina the first time they talked in a lengthy phone call how they might heal Ava. They planned three surgeries for her first two years of life to make Ava’s half of a heart do the work of a whole one.

In those three steps, a surgeon will reroute how her blood flows through the girl’s body.

Usually, half the heart pumps to the lungs and the other half to the rest of the body. Ava’s blood will go to her body first and make a detour to her lungs on the way back. The single, longer loop only needs half of a heart to work.

Children who survive the procedures can run and play and have friends, Eidem told Christina. They walk to their first day of kindergarten and dance at prom.

They get married and have little girls of their own.

Another wrinkle

Christina and Brad drove every few weeks from Clive to Rochester early this year so the Mayo doctors could look at Ava’s heart. They used high-frequency sound waves to see inside her body.

In late March, Eidem spotted another problem. A narrow passage in Ava’s heart that connects one half to the other — a tiny, twisted honeycomb that all infants have until a few days after they’re born — was smaller than it should be. Subsequent tests showed that it was getting smaller.

It was a dire complication for a baby like Ava, who needs that passage to get oxygen-rich blood from her lungs to her brain and the rest of her body. She might only have a few hours outside of mom’s body before she would starve of oxygen.

It cut her chances of survival to less than 50-50 and meant that a surgeon would have to operate soon after birth.

“We’ve essentially never done that before,” Eidem said. The doctors usually postpone the surgery for two or three days to let infant hearts and lungs adjust to life outside of the womb.

Their plans were accelerated. Doctors would remove the twins with a Caesarean section surgery about a month before they were due. The stress of a normal birth would be too great for Ava.

And Christina would need to live in Rochester for the month before the birth so doctors could keep a close watch.

Christina had a week to pack her life into a big sport-utility vehicle.

She said “goodbye” to her big black dog Max and cat Sully in April and moved to a hotel suite across the street from the Rochester hospital.

And on May 8, Christina lay in a Mayo operating room with dozens of doctors and nurses nearby. Some would open her belly, retrieve the tiny twins and sew her back together. Some would tend to Aidan, an infant born one month premature.

The rest would move Ava to another operating room, halt her walnut-sized heart and go to work.

The years of struggle to get pregnant and months of worry about her little girl’s heart had led to this moment, when a surgeon opened Christina’s belly and Ava Grace cried out for mom.

Someone held up Ava for a moment for Christina to see.

It was just enough time for Christina to say “I love you” and wonder whether she’d ever hear her girl cry again.