By Ruth Sheehan
The News & Observer
Copyright 2008 The News and Observer
RALEIGH, N.C. — For those of you who have written or called me to asked about baby Ethan Benoit, I’ve got good news and I’ve got bad news.
The good news is that Ethan — a 1-year-old who suffers from an extremely rare skeletal deformation that impinges on every organ of his body — is still alive.
This despite the predictions of doctors at UNC Hospitals, who sent him home over Thanksgiving with a “do not resuscitate” order and little hope he would hang on so long.
“They expected him to die within days, if not weeks,” said Shane Benoit, the boy’s father. “But Ethan is a fighter.”
The boy still relies on a full complement of respirator, feeding tube and IVs to keep him breathing, eating and drinking. He has his ups and downs. And it is still unclear how much, if anything, he can hear or see because of strokes he experienced at 6 months.
But all said, he is doing far better than expected.
Yep, that’s the good news.
The bad news is his parents, Shane and Sheree Benoit, are once again faced with difficult decisions about what to do for their son.
Before they brought him home to the tiny trailer they rent outside Zebulon, where they provide fulltime care for the child themselves, they made all the preparations for his death, even buying his gravestone.
But the boy has proven so resilient and has rallied so triumphantly that the Benoits feel that they need to move to the next step: surgery to relieve some of the skeletal pressures on Ethan’s brain and internal organs.
There’s a problem, though.
The only hospital in the nation that has anything approaching a lot of experience in dealing with Ethan’s disorder is A.I. Dupont, located in Wilmington, Del.
And Medicaid will not pay for the Benoits to take Ethan out of state for this work.
Medicaid has informed the Benoits that, with Duke and UNC Hospitals close at hand, the trip to Delaware is unnecessary. Even though neither Duke nor UNC has had much experience dealing with the disorder, much less surgery to address its effects.
“We’ve kicked and screamed, and they will not allow it,” Shane Benoit said. “They will not pay a dime for the treatment or for the ambulance ride to get him there.”
So, the Benoits are planning to drive Ethan to Delaware themselves — in a used minivan donated by generous readers last fall.
This is more complicated than strapping in the car seat. Remember, Ethan relies on several life support machines which, in the absence of an ambulance, will be plugged into the minivan’s lighter sockets with converters.
Ethan is scheduled for the tests and a preoperative assessment May 29.
The cost for that visit alone will be $20,000, due upon arrival.
If Ethan is accepted for surgery — and that’s a big if — it will be conducted in August.
The operation will involve a metal rod installed in Ethan’s spine and into the base of his skull, his father said. It will be painful. It also could be deadly to the child.
And it will cost more than $200,000, he said. Benoit, a carpenter who has been unable to work since his son’s birth, has no health insurance. He expects to be paying for the surgery in small installments for the rest of his life.
But what else, he asked, is a parent to do?