Miracles of the heart

Juneau infant survives medical odds against him

Posted: Sunday, April 30, 2000

Daniel and Sarita Knull say they know the power of prayer.

After months of emotionally wrenching, ever-changing medical news, and after more than five consecutive weeks away from Juneau, the Knulls are back home with their infant son and firstborn, Ethan Lee.

There was a high probability it wasn't going to happen that way. But they attribute the turnaround in their fortunes to steady prayer by friends in several local church congregations.

When Sarita Knull was 12 weeks pregnant, a routine ultrasound turned up ``a dark region'' on the baby's back that was later confirmed in Seattle as a swelling due to excessive water between the skin and vertebrae. That's often a precursor to Down's Syndrome and other severe conditions, and just a general ``red flag of bad things,'' Daniel Knull said.

Specific tests came back negative, but then doctors discovered that Ethan's heart had only two chambers, rather than four, with related abnormalities affecting the aorta and pulmonary artery, which conveys blood from the heart to the lungs.

His stomach and liver also are switched, and he has multiple, small spleens. He was given a 20 percent chance merely to survive the pregnancy, and even then was not expected to live more than a year.

``We cried all the time and it got hard to face what possibly could be,'' Daniel said.

``All they could do was monitor,'' Sarita said.

Gradually, though, the outlook brightened somewhat.

Daniel said he decided finally that being depressed wasn't doing any good. The diagnosis changed so often that it seemed anything was possible, he decided.

And by the sixth month of Sarita's pregnancy, a cardiologist concluded that there were some feasible medical treatments if Ethan was a full-term baby. By the seventh month, he had caught up to and passed the national average for fetus development, weighing three pounds, three ounces.

The Knulls had been going to Seattle monthly. On March 18, they went there abruptly when Sarita went into pre-term labor. Ethan was born in Seattle Swedish Hospital 10 days later in a natural delivery, ``pink and screaming,'' weighing 6 pounds, 9 ounces, Sarita said.

He was immediately placed in a neonatal intensive care unit and hooked up to monitors and intravenous tubes. After a fight with the Knulls' insurance company, doctors arranged for Ethan to undergo open heart surgery by a world-renowned specialist in San Francisco, Daniel said.

The five-hour operation took place April 14, and Ethan received an artificial shunt to even out his blood flow.

Monday night, Ethan came home to Juneau.

``He's doing great,'' his mother said Wednesday. ``He's got a set of lungs on him.''

The medical procedures aren't over. Ethan is expected to undergo another surgery within five months to replace the shunt with natural material that will grow with his body.

It has been an ordeal for the family. And Daniel, a city maintenance employee, and Sarita, who did in-home day care, have some large bills associated with travel to Seattle and San Francisco.

But Sarita says: ``In the end, I think everything was worth it. He turned out to be an absolute joy, even with everything we've gone through.''

The Knulls say they have been overwhelmed by the people who've prayed for them and sent them messages of encouragement.

Daniel said: ``Don't give up faith that children can pull through. They're little miracle workers themselves.''

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