Meet Kid Captain Lucas Moore

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 that can result in heart problems and other health issues.

“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.”

The hospital helped our family find the final piece of the puzzle as to why he was having so many different ailments.

“He was also referred to the University of Iowa by our local ENT doctor, because he wasn't able to make sounds come out of his mouth; they only came out of his nose,” she adds. “He could only make ‘n’ and ‘m’ sounds, and we knew that there was some abnormality going on there.”

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.

Specialists in the otolaryngology department diagnosed Lucas with velopharyngeal insufficiency, when the soft palate does not close tightly against the back of the throat, leading to air coming out the nose while speaking.

“He had two different referrals from two different providers for two different conditions, and we were able to have (appointments) on the same day,” Lisa recalls. “The hospital helped our family find the final piece of the puzzle as to why he was having so many different ailments.”

Lucas had surgery in 2016 to lengthen his palate “so he could make sounds come out of his mouth and not out of just his nose,” she says. “Now he is able to talk more clearly and talks all the time, which he couldn't before.”

With the diagnoses, Lucas has been able to receive proper treatment and still sees the University of Iowa genetics department annually, as well as other specialties for followup care.

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

“Whenever he goes for doctor appointments, he is always wearing black and gold,” Nicholas says.