Hypoplastic left heart syndrome

I met Deb Dzubak and her 14-year-old son Zachary this summer at a regional Joni and Friends Family Retreat, a five-day accessible camp that gave forty families affected by disability a fun and inspiring time to recharge batteries. The U.S. has a number of different organizations offering retreats for families affected by disability.

In a telephone interview after the retreat, Deb said of Zachary’s birth: “After they cut his umbilical cord, he made a little noise and instantly turned purple.” Eventually, Deb and husband Dale learned Zachary had a congenital heart defect called hypoplastic left heart syndrome. Much of the left side of Zachary’s heart was undeveloped, and he needed an immediate operation to connect left and right side blood vessels. Deb was told that over time he would have to refrain from contact sports, and that she should also protect him from extreme heat and cold.

⤥ Summer Fun Starts Here ⤦

⤥ Summer Fun Starts Here ⤦

⤥ Summer Fun Starts Here ⤦

⤥ Summer Fun Starts Here ⤦

As Zachary grew, Deb began noticing her son disliked noisy crowds. She said, “For instance, on one of his birthdays, we had relatives over and had to whisper because Zachary couldn’t handle it if you talked loud. So we whispered the ‘Happy Birthday’ song and even then he had a royal meltdown. He got hysterical, screamed at the top of his lungs, and it took a long time to calm him.”

In time, a psychologist suggested that Deb have Zachary tested for autism spectrum disorder (or autism), even though Zachary didn’t have some of the behavioral problems most children with autism have. Finally, at age five, he was diagnosed with it.

A National Institutes of Health website states that children with autism demonstrate deficits in social interaction, verbal and nonverbal communication, and have repetitive behaviors or interests. Some children with autism, like Zachary, tend to repeat other people’s words. Autism may affect one child in 150.

“Yet Zachary isn’t like many children with autism,” said Deb. “He’ll look at you when you talk to him. He comes when called. He is gentle and gives hugs. At camp this year, he was willing to try new things, including (heavily supervised) rock climbing, inner-tubing on water, and kayaking.”

Other people don’t see Zachary the way Deb does. “What I see in him are the fruits of the Spirit,” she said, referring to her faith. “He has love, joy, peace, patience, kindness, and gentleness, for instance. God has blessed him.”