Not really trach-related, but interesting article on preemies.

Whose Miracle?
Samantha Collins

Wed. Jan. 3 2001 12:46 PM

When Laura Inglis found out she was pregnant with twins, she had dreams of
pushing them down the street in their double stroller. But, when Laura went
into labour only 26 weeks into her pregnancy her worst fears became true.

Laura gave birth to a boy and a girl, each weighing less than a pound.
Doctors told her their chances of survival, even with intensive
intervention, was sixty per cent at best. The twins, Carley and Tucker
Inglis, were in critical care at the neonatal intensive care unit at the
McMaster Medical Centre in Hamilton, Ontario.

The biggest threat in the first days of life for babies born this extremely
premature is lung damage. But that's just the beginning.

"There is always a lot of anxiety in the first couple of days with respect
to functioning of their lungs because their bodies are not really designed
to be breathing the atmostphere," says Dr. Michael Marrin, Director of
Neonatology at Hamilton Health Sciences Corporation. "So they are going to
suffer some damage to lungs. They're going to get worse before they get
better. They must also watch for bleeding in the brain. About ninety per
cent of the time, if that bleeding is going to occur, it happens in the
first three days of life."

Doctors describe life in the neonatal intensive care unit as a roller
coaster ride. Each day proved a struggle for life for Carley and Tucker and
was incredibly emotionally and physically draining for their mother. And
things can go from good to bad, to worse, very quickly.

"They are working on one and you turn around they're working on the other.
You just didn't know where to go or what to do," says Laura Inglis.

According to Dr. Marrin, parents must make difficult choices. If they choose
extreme intervention, there is a very high risk of severe disabilities, if
the baby survives at all. Extremely low birth-weight babies are at risk for
blindness, deafness, learning disabilities and a multitude of other
disabilities. On the other hand, for a parent, it is very difficult to
overlook the chance that the baby might turn out just fine.

"The parents ultimately have to make the decision. We have to be patient,"
says Dr. Marrin.

The choice parents must make is between saving the life of the child,
knowing the risk of future disabilities, and removing the breathing tube -
allowing the baby to die.

"Sometimes parents are able to make a decision within hours. Sometimes it
takes a couple of weeks," says Marrin.

A recent study, published last August in the New England Journal of
Medicine, found that babies born before 26 weeks had an eight per cent
chance of surviving. Of those alive at birth, only 13 per cent were free of
disabilities by age 2 1/2. Of those discharged from the Neonatal Intensive
Care Unit, about half were free of disability by age 2 1/2.

Ron Federchuk is considered one of the lucky ones. Born at only 24 weeks
gestation, he's hard of hearing and blind in one eye. Other than that he's a
normal kid. Federchuk is now in his final year at the University of Toronto.

His father certainly doesn't regret the decision they made to save Ron's
life as a premature baby. His mother calls him a miracle. "Acorns come in
little packages and make big oak trees, once they start growing normal,"
says Ronald Federchuk Sr., Ron's father. "He caught up in grade two."

But Gaelle Trebaol doesn't agree. Her son Erwan was born at 25 weeks
gestation - 15 weeks before full term. When Gaelle took him home, doctors
called his survival a miracle. But it wasn't long before Gaelle and her
husband, Louis Houle, realized Erwan would never be normal. "It's not a
miracle. It's a miracle of the hospital, not our miracle," says Trebaole.

By age one, Erwan was diagnosed with Cerebral Palsy. At 17 months, he was
diagnosed with severe deafness. At two, he had corrective eye surgery.
Convulsions started at age three.

Erwan now suffers from learning disabilities, attention-deficit disorder and
mild retardation. And Gaelle Trebaole has started an organization called,
"l'Association des parents d'enfants prematures du Quebec" (The association
of parents of premature babies of Quebec).

Dr. Hillary Whyte used to head the preemie follow-up program in two Toronto
hospitals. She is convinced that we shouldn't try to save babies born before
26 weeks gestation. "Even at best, when looking at a ten percent chance of a
baby being normal, it really doesn't justify this aggressive resuscitation
and intervention," says Dr. Whyte.

Dr. Marrin is worried parents don't look far enough ahead. "I've had people
say it doesn't matter Doc. We don't care if our child is blind or unable to
work," says Marrin.

"They are thinking when the child is a child, but if the child is now 45 and
the parents are in their mid 60s, it's quite a different matter."

But sometimes even the medical miracles fail. At Hamilton Health Science
Corporation, doctors were unable to save Carley Inglis. Her twin brother,
Tucker, grew stronger and went home with his mom and dad on Oct. 27th, 11
weeks after his birth. Still, the Inglis's, like other parents, hope for the
best. For only time will tell whether Tucker is truly a miracle baby.