Growing up with a congenital heart defect

In many ways, Michael is just like any other 11-year-old, but he has had four open heart surgeries.

Scars cover a large portion of Michael's upper body, with one running nearly the entire length of his torso [Angelo Merendino/Al Jazeera]

Leslie Galicki was 18 weeks pregnant with her fourth child when she learned that there was a problem with the baby’s heart. An ultrasound scan showed that the right side of his heart, the side that pumps blood to the lungs, was not forming correctly – a condition known as Hypoplastic Right Heart Syndrome.

A doctor and cardiologist reviewed the scan and gave Leslie a brief explanation before telling her that it would be completely reasonable to terminate the pregnancy. “Up to that point I was holding it together, but then I fell apart … that’s not even in my repertoire. Regardless of what was going to happen, he was going to get a chance,” she says.

Leslie was 39 years old.

Michael, Leslie’s youngest child, is now 11, and she refers to him as her favourite 40th birthday gift. 

On paper Michael is like most other kids his age: He enjoys playing animated video games such as Portal Stories Mel, he is fascinated by everything about trains, and when his mother makes chocolate chip cookies he gets his own special cup of cookie dough batter.

Michael is a fan of Disney movies; two of his favourites are Big Hero Six and Inside Out.

“Inside Out,” Michael says, “is an emotional film where the protagonist is the emotions inside a girl named Riley. I’m supposing that the emotions are in the brain.”

Michael and his friends, Henry and Charlie, like to have Nerf gun battles. “We always make a fort and, well, me and Henry always come up with the best fort.”

But Michael is different from most other 11-year-olds. Through a series of four open heart surgeries, with the first taking place when he was only two days old, Michael’s heart has basically been “re-plumbed”.

“In essence,” Leslie says, “the other side of his heart is doing the whole job.”

As a result, Michael struggles to keep up physically with his peers. He tires easily and is very afraid of getting hurt. Scars cover a large portion of Michael’s upper body, and his “zipper”, as he calls it, runs nearly the entire length of his torso, extending above his shirt collar.

Indents from chest tubes dot his stomach and sides, and Michael is, at times, uncomfortable with letting people see his scars. Sometimes, when he looks at them, he does not know what to think. When asked if he wants to show his scars for a photograph, Michael responds: “To me that would be too embarrassing.”

Leslie remembers how, after Michael’s first open-heart surgery, the family was being led to see him in the recovery area when, “All of a sudden a siren went off and someone walked in and said, ‘There’s a kid coding back there (cardiac arrest)’.”

It was Michael. He was having a heart attack.

The surgeon rushed in and they opened him up right there in the room.

“They painted a really bad prognosis for him,” Leslie says.

Michael has a congenital heart defect and autism [Angelo Merendino/Al Jazeera]

Michael had been without oxygen for 30 minutes and then put on ECMO (baby life support), which often results in stroke in the pediatric patient. But in the days following, tests of his major organs showed no signs of damage, which was a positive indicator for how his brain had fared during the cardiac arrest.

The family’s oldest child, Scotty, is on the autism spectrum and as Michael grew, Leslie had her suspicions about his developmental progress. “Michael didn’t walk until he was nearly three, and he had verbal issues, but his were different from Scotty’s. His needs are more than likely related to his heart condition.”

Leslie and Dennis decided to enrol Michael in a special pre-school. After two years, officials at the school felt that they were not able to support his needs and Michael was transferred to a new school for kindergarten, followed by a different elementary school. Leslie felt the schools were not equipped or interested in taking care of Michael.

“It was horrible,” she says. “All they did was document Mike’s behaviour, and it was so confrontational. There was constant restraining.”

While in kindergarten, Michael received a formal diagnosis of autism. The close-knit family pulled together in the face of this challenge. But conditions at Michael’s school continued to deteriorate and the family felt that it was not teaching Michael. After years of praying that things would get better they enrolled him in an online charter school. “I called on a Sunday and he was enrolled on a Thursday. It’s been phenomenal,” says Leslie.

Home school has been an adventure for the Galickis. Michael’s favourite subjects are history and science, and he enjoys chemistry experiments. “We made an igloo in a shoebox,” he says.

The downside to home schooling is that Michael does not have the social experiences he would have while attending a traditional school. “Mike wants to be social and to have friends, but there are a lot of communication and behavioural issues,” Leslie explains.

The bond between mother and son has benefited from their teacher/pupil relationship. “When Mike was born I wasn’t allowed to hold him for the first 30 days,” Leslie says. “I worried so much about bonding with him, but now we are so attached.”

Source: Al Jazeera