Boy born with deformed heart inspires 'Grey's Anatomy' episode

  • Written by Laura Bollin

A 9-year-old boy who was born with two rare heart conditions was the inspiration for a storyline on a recent episode of “Grey’s Anatomy.”

Ian McDonagh of McHenry was born in November 2003 at Advocate Christ Medical Center in Oak Lawn with hypoplastic left heart syndrome, a condition in which the heart’s left ventricle is missing and the atrial septum – the wall that divides the heart’s chambers – has no hole through which blood can flow. An infant must have a hole in his or her heart so blood can flow through the body after birth. The hole usually closes within two hours of birth.

In hypoplastic left heart syndrome, the blood usually is diverted to the upper right chamber of the heart, but in Ian’s case that was not possible because of the intact septum. Thus, blood had no way to get throughout his body, explained Dr. Alexander Javois, a pediatric cardiologist at Advocate Christ. Babies born with either condition rarely survive, he added.

“People have delivered babies with these problems before, and then transfer them in bad condition to the neonatal intensive care unit,” Javois said. “You can’t stabilize a baby that needs surgery. As soon as Ian was born, we knew he would start dying.”

To better Ian’s chances of survival, doctors delivered him in the cardiac catheterization laboratory, a room usually reserved for electrocardiograms and stress tests and where a baby had never before been delivered. Javois and a team of 30 doctors, nurses, therapists and surgeons worked for 50 minutes to save Ian’s life with a procedure known as an atrial septostomy. To create the hole in the infant’s septum, doctors inserted a wire 19-thousandths of an inch in diameter into Ian’s umbilical, and then used radio frequency energy to heat up the wire and burn a hole into his heart.

As if that operation on an infant was not intricate enough, doctors placed over the wire a series of balloons outfitted with tiny razor blades. The balloons, when inflated, cut into the wall of the heart to make the hole bigger.

A hospital in Boston twice tried the same procedure on infants. Both babies required heart transplants and both later died, Javois said.

“We wanted to do things for Ian immediately, and it worked beautifully,” Javois said. “Usually, it takes between one and four hours to get children to the lab before surgery, and we created the hole within 50 minutes of life.”

When medical researchers from “Grey’s Anatomy” called Javois, he did not believe it was real.

“They read an article online, and knew Ian’s name, but I was very suspicious,” Javois said. “Through a series of emails, I found out they were the real deal.”

The episode aired April 25. Javois said the storyline was similar, but more relaxed than the actual event.

“On the show, it was a very quick procedure without much anxiety,” Javois said. “In real life, it was anxious. Ian came out barely breathing, and we were frantically working on him. It wasn’t so simple and calm in real life, but they did a great job on the show.”

Perinatal cardiologist Bettina Cuneo made the diagnosis, and Ian’s mother, Annette McDonagh, said the news was unexpected.

“It was shocking,” McDonagh said. “We have two healthy older children, so we were surprised anything would be wrong with our third child.”

Ian has no lasting complications from his heart conditions, other than that he is slightly smaller than most children his age and cannot participate in contact sports, McDonagh said. He has undergone five catheter surgeries and three open-heart surgeries to make his blood flow patterns normal. In a person with a normal heart, oxygenated blood flows throughout the body and deoxygenated blood goes to the lungs. In Ian’s heart, the blood was mixing, Javois said.

“We’ve told Ian that he has a special heart,” his mom said. “He’s not really into sports right now. Both of his sisters are into theater, so he is leaning that way. His story was featured on a television show, so maybe he will end up there.”

Advocate typically sees about 25 to 30 children per year with hypoplastic left heart syndrome, but has only seen two cases of children with intact atrial septum in the last 12 years, Javois said. Since Ian’s successful surgery, doctors at Advocate have performed six surgeries in the cardiac catheterization lab for babies born with an intact atrial septum.