'No good choices' for Ethan

Ethan Benoit is nearing the end of his short life. But the people who love him most cannot bear the thought of letting him go.

Ethan was born in December with a rare and deadly birth defect that causes his bones to be misshapen, impinging on every organ in his body, making it hard for him to breathe, forcing him to be fed through a tube.

Adding to the damage is the series of strokes Ethan suffered in late May. The doctors believe he lost much of his brain function at that time. I wrote about Ethan, and the struggles his parents Shane and Sheree Benoit are facing, earlier this year. The community responded with a flood of help. And in August, Ethan was deemed well enough to come home from UNC Children's Hospital.

Unfortunately, the stay was short.

In September he was back in the hospital, this time linked to a respirator. Efforts to wean him from the breathing machine have only pitched him into crisis, requiring resuscitation.

Currently, Ethan is in intensive care, battling E. coli and staph infections. Even when those are under control, the options for Ethan's future are grim.

"There are no good choices," Shane Benoit said.

The doctors at UNC have done all they can. There is no hope of recovery. But the Benoits, especially Sheree, are having a hard time accepting that.

There is a hospital in Delaware that has dealt with this disorder more than any other. Ethan could be transferred there -- but the cost would be astronomical and Medicaid won't pay. Also, there are no guarantees that Ethan would survive the operation.

At best, surgery would give Ethan a bit more time. At worst, he would be left in pain.

Another option would be to transfer Ethan to a nursing home that handles infants on respirators. The closest one, the Benoits have been told, is in Greenville. But that doesn't sound like much of an existence.

The most appealing prospect would be to bring Ethan home with live-in nursing care.

Problem is, the Benoits and their three other children are already on top of one another in the small mobile home they rent just outside Zebulon.

"We'd need to build on two more bedrooms, and a bath," said Shane Benoit, to accommodate Ethan's equipment and the nurse. They have no money for such an endeavor.

The only other option would be for the Benoits to change Ethan's resuscitation order and accept responsibility for his end-of-life care at home themselves.

There would be comfort in having him so near. In knowing that he spent his final days in the cocoon of their tenderness.

But imagine, as a parent, holding your son's short future in your hands. Imagine at his death wondering if something you did or didn't do precipitated that last breath. Sheree Benoit is not sure she is ready to make that wrenching decision.

Shane said his wife is looking for someone to tell her what she wants to hear: That Ethan has endured so much, there is still hope for his future. That surgery might work. That his brain might recover some function.

That he will, in her words, pull through.

But sometimes the kindest thing is letting a loved one go.

Even one as loved as Ethan Benoit.