Posted November 10, 2021

Lucas Moore’s health care team at University of Iowa Stead Family Children’s Hospital provided his parents with the missing piece of a puzzle when they diagnosed him with a rare syndrome called 22q, two days after birth. “We didn’t know that there was anything abnormal until when he was 2 days old, before we were discharged from the hospital,” his mother, Lisa, recalls of his birth at a local hospital in Fort Dodge.

“The doctor noticed a (heart) murmur, so they decided to do some additional workups,” his father, Nicholas, adds.

“What they ended up finding out is he had a very large ventricular septal defect, so a very large hole in the ventricles and then smaller holes in his atrium,” Lisa says. “He had both the ventricular septal defect as well as an atrial septal defect. It was life-threatening where he had to have open-heart surgery when he was three months of age.”

Lucas experienced several severe infections the following two years, including a time when his organs began to fail, and he went into septic shock.

He was airlifted to a Des Moines hospital on more than one occasion before being referred to UI Stead Family Children’s Hospital’s immunology department.

“It’s pretty unique because he had just all sorts of various conditions that were happening and we didn’t know if it was just a fluke that this is just all happening to him or was there another reason that he’s having all of these pretty curious conditions,” Lisa remembers. “So, (the surgery) helped his heart… but he still kept getting very serious illnesses.”

Lucas was diagnosed with DiGeorge syndrome, also known as 22q11.2 deletion syndrome, which can have a variety of symptoms, including congenital heart disease, palate defects and recurrent infections.

With the diagnosis and several specialist visits and surgeries later, Lucas has been able to receive proper treatment and still sees the University of Iowa genetics department annually, as well as other specialties for follow up care.

Now 8, the Fort Dodge boy is a drummer, plays youth sports, and loves cheering for the Hawkeyes.

“It’s a wonderful feeling, knowing that he has this diagnosis, but it doesn’t define him,” Lisa adds. “He knows sometimes that things might be a little harder for him compared to other kids, but I think that makes him even stronger… that he can accomplish anything that any kid or person can do. He’s just a very determined little boy.”

You can read Lucas’ feature story, as told by UI Children’s, here:

Story Credit: University of Iowa Stead Family Children’s Hospital