Families cope with infant surgeries, care

• By CHANTE DIONNE WARREN
• Advocate staff writer
• Published: Mar 24, 2008 - Page: 1B - UPDATED: 12:05 a.m.

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Anna Claire Varnado attaches a feeding pump into a dime-sized tube in her 5-month-old daughter Marin’s belly, where Varnado can dispense the nutrients and medicines the child needs.

Marin’s blue eyes twinkle and she coos at her mother.

Scars along Marin’s chest and belly are a reminder of the life-saving operations that have kept her alive.

Of the approximately 10,000 babies delivered each year in East Baton Rouge Parish, at least 50 are born with heart defects, said Michael Crapanzano, a pediatric cardiologist in Baton Rouge.

Their chances of survival are high, Crapanzano said. “Small babies are part of that 97 percent of heart patients that survive surgery,” he said.

Parents, nevertheless, are often faced with weighty decisions and emotional and financial strains in the race to keep their babies alive. Numerous surgeries, lengthy hospital stays, specialized care, weekly doctor visits and travel to and from medical facilities both in-state and out-of-state often leave parents battle worn.

Trust becomes a necessity. “They have to release their most valuable commodity to a doctor,” Crapanzano said.

Since Baton Rouge has no pediatric cardiovascular surgeon, most children from this area who need cardiac surgery must undergo those procedures in New Orleans or Boston. Hospital stays can last from a few days to several months, leaving many families without adequate financial resources, Crapanzano said.

According to the American Heart Association, congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Death rates for infants younger than 1 year are 38.3 per 100,000 white infants and 56.0 per 100,000 black infants.

Marin was diagnosed a day after birth with two defects, a double-outlet right ventricle and a hole in her heart.

Anna Varnado, a stay-at-home Baton Rouge mom, and her husband, Jacob, a member of the Marine Corps, were not prepared for the news.

At the age of 2 1/2-weeks, Marin underwent open heart surgery at Children’s Hospital Boston.

There were complications, including the baby losing 10 units of blood that had to be replaced during the surgery. She also was sedated for two weeks, contributing to a state of paralysis that affected one of her vocal chords. That condition will straighten out with therapy, Anna Varnado said.