Heroics AND Heartbreak : ‘WE HAD GRAVE CONCERNS’

Two years ago, as she held her 8-year-old comatose son, Joshua, Shay Eikner couldn’t help but see the bitter irony of her situation.

After begging doctors in 1982 not to save the lives of her very sickly, premature twin boys--born at 27 weeks--one was finally dying after a life of profound medical problems, surgeries and pain.

And now doctors were encouraging Shay and David Eikner to pull the plug.

“For (the doctors), saving them at birth was an experiment and a challenge. I even heard interns brag, ‘I saved a 24-week baby.’ But I don’t think any of these people ever thought about the long-term consequences,” says Eikner, who lives in Aurora, Colo.

Joshua and Matthew Eikner were fighting for life from the start.

As an infant, Matthew underwent heart surgery, had jaundice, rickets and bleeding in his brain. He came home from the nursery after three months to what his parents were told was a bright future.

An attending doctor “was very optimistic about his outcome and told us that 80% of all preemies become ‘substantially’ normal,” Eikner says.

Matthew, now 11, has cerebral palsy, which requires physical therapy. He has had six orthopedic surgeries. He struggles in school because of inferior fine motor skills and vision problems.

His younger brother, Joshua, was resuscitated the first of many times only hours after birth.

He had heart surgery, more than 25 chest tubes inserted for lung problems and was put on maximum ventilator pressure to, essentially, do all breathing for him.

At one point, his kidneys shut down and he bloated to three times his size. He had a brain bleed that one doctor referred to as a stroke.

But when the Eikners questioned continuing Joshua’s treatment, they were told that they were “way out of line.”

“We had grave concerns about continuing life-sustaining procedures but (an attending doctor) insisted that Josh had a will to live,” Eikner says.

Joshua came home at four months with a heart monitor and continuing problems, including breathing difficulties and gallbladder disease. At age 4, he began having seizures and was having 60 or more seizures a day by age 7.

Finally, surgery was performed to remove the entire right side of his brain in order to stop the seizures. They ceased, but a shunt placed in Joshua’s brain to relieve swelling caused numerous problems and infections.

In the 22 months before he died, Joshua underwent 20 surgeries to correct the shunt, which ultimately led to his deterioration, a coma and death in the autumn of 1991.

In hindsight, says Eikner, the family was given false hope, incomplete information and no say in decisions. And over the years, the family felt medical professionals involved in the case had distanced themselves.

“As Joshua’s care became more difficult and unsuccessful, much of the medical community began to back away in frustration,” Eikner says. “Josh was an uncomfortable reminder to them. To them, a handicapped 8-year-old was much less interesting than an 800-gram baby.”