By AMERICAN HEART ASSOCIATION NEWS

0413_SFTH_Anabelle Provisor_Blog

Twelve hours after Anabelle Provisor was born, a nurse’s assistant noticed she was having trouble nursing.

“She would latch on, but was soon sleepy and lethargic,” recalled Arlene Provisor, Anabelle’s mom.

A pulse oximetry reading – a diagnostic test mandated by most states for all newborns – showed Anabelle’s oxygen levels were low, and she was admitted to the neonatal intensive care unit.

Arlene and her husband Bruce weren’t able to see their newborn daughter until a few hours later. They found her intubated and hooked up to several I.V. lines and machines, as doctors tried to discover what was wrong.

“We were very emotional,” she said.

Tests revealed Anabelle was born with a critical congenital heart defect in which the pulmonary artery and aorta are reversed, called d-transposition of the great arteries. Instead of oxygen-rich blood going from the lungs to the rest of the body, Anabelle’s heart was sending it back to the lungs.

She was immediately transferred to a hospital specializing in pediatric cardiology, and then to Children’s Hospital Los Angeles a week later to undergo open-heart surgery.

The Provisors, who live in Torrance, California, took their daughter home a week later and she seemed to do well, passing checkups every few months with a pediatric cardiologist.

Anabelle (middle) with, from left, mom, Arlene, brothers Evan and Jaden, and dad, Bruce.

Anabelle (middle) with, from left, mom, Arlene, brothers Evan and Jaden, and dad, Bruce.

But when Anabelle was 18 months, an echocardiogram showed her pulmonary artery was narrowed by scar tissue from surgery, making it more difficult for blood to flow and putting strain on her heart. The toddler would need a second open-heart surgery.

The second procedure, scheduled a month later, presented a new challenge: Anabelle was now mobile and didn’t want to lie still following surgery.

“She just wanted to get up and move around, but you can’t do that with tubes coming out of your chest,” Arlene said.

In the weeks following Anabelle’s discharge, the couple worried their energetic toddler would fall and injure the surgery site with all her running and climbing.

“It was a lot more anxiety,” Arlene said. “After the first surgery, she would just lay there and sleep.”

When Anabelle turned 5, her cardiologist delivered news the Provisors were hoping for.

“He told us we could just treat her like a normal kid and that we shouldn’t hold her back from anything she wanted to do,” Arlene said.

These days, there seems to be little that Anabelle, 8, doesn’t do. The outgoing third-grader plays soccer and basketball, participates in gymnastics and a local theater group, and plays with her brothers Jaden, 4, and Evan, 1.

“If it was up to her, she’d do more,” said Arlene.

Anabelle basketball

Congenital heart defects are the most common birth defect, affecting about 40,000 babies born in the United States each year. Defects range in severity from simple holes between chambers of the heart to severe malformations, such as the complete absence of one or more heart chambers or valves.

Some heart defects are minor and may never cause symptoms. Others, like Anabelle’s, require treatment within the first days of life.

Anabelle indoor skydiving“No one had answers for me,” Arlene said, recalling the early days of Anabelle’s life. “I wished I would have known there were kids out there like Anabelle and that she could be fine.”

People are often surprised when they first see Anabelle’s scar.

“I tell them that I had heart surgery when I was a baby,” Anabelle said. “Some people ask me if it hurt and I say that I don’t remember because I was just a baby.”

Photos courtesy of Arlene Provisor