'You've got to believe'

Torn between their religion and love for their child, a Jehovah's Witness couple from Sweden put faith in a Columbus doctor to save their little fighter

The Columbus Dispatch/October 25, 2004
By Jeb Phillips

On a February day in Stockholm, Sweden, Maria and Alex Altinterim learned they were having twins. The echogram technician could see the two little hearts beating on the screen. Maria and Alex could see them, too. And even to the first-time parents, the hearts clearly looked different from each other.

"Something is wrong," the technician said.

Three days later, doctors told the Altinterims that one heart was missing a part. The left ventricle, which pumps blood to the body, wasn't developing in one of the babies.

The diagnosis of hypoplastic left heart syndrome left them with two options. One was the Norwood procedure, which would involve three open-heart surgeries. The baby would need blood transfusions during the procedures or suffer brain damage.

But the Altinterims are Jehovah's Witnesses, and to them, blood is sacred. The religious group interprets Bible passages as commanding them to abstain from receiving blood, even if it means dying without a trans- fusion. So they settled on the second option.

"We planned a funeral," Maria said.

The baby was supposed to live hours or days. Certainly no longer than a month.

On June 23, Robin Altinterim was born with a healthy heart. His brother, Kevin Altinterim, was born six minutes later, and his parents began waiting for him to die.

Kevin lived through the night. He lived all through that week. Then the next one. He had his 1-month birthday, shocking the doctors. On Aug. 23, he turned 2 months old.

"I cried every day. Every single day," Maria said.

Kevin was now a gurgling baby with huge brown eyes, skin a little blue from his body's lack of oxygen. His parents decided they would try to save him.

"He was fighting," Alex said. "We had to do our part."

Swedish doctors still said there was nothing they could do without transfusions. So the Altinterims called the Jehovah's Witnesses Hospital Liaison Committee in Sweden, to see if anyone in the world could help their baby.

They found one person, in Columbus, Ohio.

A matter of days

Dr. Mark Galantowicz, co-director of the Children's Hospital Heart Center, looked at Kevin's tests and scans Sept. 17. Four days later, he called the Altinterims. I can help, he told them, and I can do it without transfusions. But you don't have months or weeks to get here.

"This is a matter of days," Maria remembers Galantowicz saying.

The Altinterims began calling friends and family members for money to make the trip. They raised $50,000 in a few hours. As an afterthought, they called their Stockholm doctors. One told them that a flight, with its changing air pressures and oxygen levels, could kill Kevin.

It's true, Galantowicz's assistant, Erin Williams, told Maria, but it was the only hope they had.

"You've got to believe," said Williams, who has a child with the same heart condition.

The next day, Alex, Maria, Robin and Kevin boarded a plane.

A loving stare

Alex first saw Maria during a church service in Stockholm 10 years ago. Neither looks like a stereotypical Swede. Both have dark hair and olive skin. Alex immediately noticed Maria's eyes, which are so brown they are almost black.

"We liked each other from the first time we saw each other," Alex said.

Maria remembers it differently. "I didn't like him at all," she said. "He was staring at me so much."

But Alex kept working on her, and she fell in love with him. They married seven years ago.

In the rare moment when Maria is searching for a word in English, she'll say it in Swedish to Alex, and he'll translate. She does the same for him.

Eighteen months ago, they felt their lives were set. Alex, 34, was in software development at Ericsson, the telecommunications corporation. Maria, 30, was a manager of a clothing store. They were building their first house.

And so, they thought, it was time to start a family.

Nervous flight

Alex and Maria had heard that they couldn't tell the airline about Kevin. An airline wouldn't want a baby dying on one of its planes. They boarded with the twins - one of whom was blue from lack of air - without an oxygen tank.

During the 10-hour trip, Kevin's lips turned nearly black. Alex walked him to the emergency exits, where he had learned there was more oxygen during flights. Kevin slept most of the way. Maria took care of Robin. Both parents prayed.

Kevin, as he had his entire life, fought his way through.

The family landed in Chicago late on Sept. 22. The U.S. Hospital Liaison Committee had arranged for Jehovah's Witnesses to drive them from Chicago to Indianapolis. Then Jim Hunt, a committee member from Blacklick, drove the Altinterims to Columbus, where they are staying with a host family.

"They have helped us so much here," Alex said.

On Sept. 23, Galantowicz saw Kevin for the first time. The next day, a Friday, Kevin had surgery.

'Kinder and gentler'

Hypoplastic left heart syndrome keeps the body from getting the blood it needs, while pumping too much blood into the lungs.

The three surgeries of the Norwood procedure are an accepted treatment. But Galantowicz has helped pioneer a way to make the procedure what he calls "kinder and gentler." It still involves three surgeries: one to stabilize the baby, an open-heart surgery to redirect blood flow and a touch-up surgery two years later. Kevin had the stabilizing one on Sept. 24. It wasn't the open-heart surgery, but Galantowicz still had to go through his chest.

With the help of a cardiologist, Dr. John Cheatham, Galantowicz began the five-hour procedure. He put two bands around the arteries that lead to the lungs, to help reduce the blood pressure there. With a balloon, he opened the flow from the lungs to the heart. And he put a stent in an artery that leads away from the heart to help more blood get to the body.

Galantowicz can do that with or without transfusions, depending on the parents' wishes. He said that every case is different, but medicines, machines and surgical techniques combined to keep Kevin from losing much blood. So he didn't need any extra and didn't get a transfusion.

Kevin, as usual, did better than anyone expected. He was out of intensive care in a day. On Sept. 28, four days after surgery, he was discharged from the hospital.

"He's tough," Galantowicz said. "He's a miracle baby."

Uncertainty reigns

Alex and Maria had packed for what they thought would be a two-week trip to Ohio. Now they could be here for a year.

No one knows for sure. Galantowicz has performed this procedure about 30 times, but not on babies as old as Kevin.

In Galantowicz's normal sequence, Kevin would recuperate for several months, then undergo the large openheart surgery to replumb his heart. His lungs, though, are damaged from too much blood, which could mean he would need a heart transplant. But the chance of that decreases every day, his doctors say.

In any case, the money the Altinterims borrowed has all gone to pay for the trip and the first surgery. Local Jehovah's Witnesses are taking care of their daily expenses. Alex and Maria are trying to persuade the Swedish health-care system to pay for the operations here. If it won't, they have a plan.

"We'll sell our house and our car," Maria said.

But how much treatment Kevin needs is determined by what doctors find out every Tuesday.

Anxious family

Last week, the Altinterims arrived at Children's Hospital with Kevin strapped to his father's chest and Robin pushed in a stroller by his mother, both babies dressed in white jumpsuits and white bunny slippers.

Robin slept. Kevin was weighed and measured, then had to lose his outfit for the electrocardiogram. The technician put gel on the end of a sensor and then ran it over Kevin's chest, near the 3-inch scar in the middle.

Kevin kicked his feet and held onto his mom's finger. She talked and sang to him. He stared at her or at a video of animals and colors playing next to him. He hardly made a sound.

"He just pooped, he just ate, he just slept," Maria said. "So everything is good."

Alex and Maria seemed completely composed. But when Dr. Steven Cassidy, a cardiologist, walked through the door, they were worried parents again.

"He sweats so much. Is that normal, Steven?" Alex asked. Maria asked about the five times a night that Kevin woke up hungry, about the formula she was feeding him, about his medicine.

All of that was fine, Cassidy said. The sweating, for now, probably means better circulation. His appetite is a sign he's healing. His medication needed a slight adjustment but otherwise looked good.

Most importantly, he had gained weight in the past week. Kevin, 4 months old, now weighs about 9.2 pounds. His twin brother weighs 18 pounds.

"I thought it was going to be a bad day," Maria admitted later. "I haven't been able to sleep thinking about the second surgery.

"Sometimes I try to think this is normal. We're on a vacation."

Outside the checkup room, Cassidy said that this is not close to normal. "Most kids his age who came to us would be dead," he said.

The lungs, and how they will heal, are what the doctors can't predict and what will determine the kind of surgery Kevin needs next, Cassidy said. Six months from now, they'll know. Until then, Kevin will need weekly checkups.

Back inside the checkup room, Robin was awake. Maria was putting the bunny slippers back on Kevin.

Then they packed up, headed for the car and drove off, to wait for whatever comes next.

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