Kaleb's Story: Thriving with a rare and complex genetic disorder

Every Halloween, Kaleb dresses up as a different U.S. president — except for the one year he was Alexander Hamilton. He also loves animals, especially his Goldendoodle.

“Her name is Jefferson, after President Thomas Jefferson. And yep, she’s a girl,” Kaleb said.

Kaleb’s room doubles as a stuffed animal zoo, complete with an aviary and amphibian tank. He even built an animal hospital where he and his grandmother recently performed a brain transplant on one of his stuffies.

“It was very dramatic, but the stuffed animal pulled through,” said Kaleb’s mom, Jenifer, laughing.

Kaleb is a smart and creative 11-year-old. Everybody knows him for his big curly hair and bright smile.  

He also lives with heterotaxy syndrome, a rare genetic disorder that can affect the development of important systems like the heart and gastrointestinal tract. He wouldn’t be here today if not for a Hail Mary procedure from an innovative team at Children’s Health^SM when he was just nine days old.   

A rare genetic condition 

When Jenifer was 20 weeks pregnant, she and her husband Karl got the diagnosis. Kaleb’s heart was on the right, instead of the left side of his body. This meant he had no way of getting blood to his lungs when he was born and would need surgery shortly after birth to help his blood flow properly.   

Jenifer and Karl met with a few pediatric heart surgeons in the area. They chose Children’s Health because not only would they have an expert surgeon, but an entire care team dedicated to their baby’s health.  

This included the then-brand-new Safe at Home Program – which enables some babies to return home, rather than staying at the hospital, between two heart surgeries in the first months of life. They worked with the surgeon to make a plan for their baby’s birth and surgery shortly after.  

But no one expected Kaleb to be born six weeks early.  

A Hail Mary procedure at 9 days old 

At 34 weeks pregnant, Jenifer started experiencing preeclampsia. This complication can cause high blood pressure and problems with various organs in pregnant women and lead to premature birth.

“Kaleb coming early made everything much more serious and scary,” Jenifer said. 

Kaleb was born with a heart defect the impacted the way blood flowed through his lungs, meaning his pulmonary veins, which carry blood from the lungs to the heart, weren't working well.  

And at only 4.6 pounds, he would be too small to have the originally planned surgery. That surgery was the only proven treatment to get Kaleb breathing properly — meaning plan A was off the table and there was no obvious plan B.  

Time was running out.  

“We had a meeting with the care team, and they came up with this Hail Mary idea,” Karl said. “They were frank, telling us that they had only tried it once before, and it was not successful. It was our only shot, and it was one of the scariest days we’ve ever had.” 

But it worked. In fact, the risky intervention that Kaleb underwent at 9 days old – which involved placing two stints to keep oxygenated blood flowing throughout his body – worked so well that the procedure has become standard of care for all babies born with this heart defect.    

“We’ve met other families whose babies have similar conditions, and they talk about this procedure as though it's been happening forever,” Jenifer said. “And to know that Kaleb was the beginning of that, he was a little pioneer when he was just this tiny guy is amazing.”    

An Amazing Kid 

Kaleb got bigger and stronger over the following weeks and months. Over the years, he's needed three additional open-heart surgeries to keep his heart working properly. But heart problems are just the beginning of what Kaleb has overcome. 

“Ironically, now cardiology isn’t what we monitor most closely,” Jenifer said. “He was born without a spleen and has some endocrine issues. He does breathing treatments and 30 doses of medication every day. But when you see him, you wouldn’t know. We’ve had medical professionals meet him and think they have the wrong kid.” 

Living with heterotaxy is difficult, unpredictable and requires long-term monitoring and care. But Kaleb’s care team and family do everything they can to keep him as healthy as possible, so he can focus on regular kid things — like swimming, Legos, Minecraft and learning everything he can about U.S. presidents.  

“Children’s Health has been there for us through everything, always with a personal touch and so much care,” Jenifer said. “We’ve had a lot of miracles and been the recipients of some incredible medical advances that weren’t happening in many other places. And because of it, Kaleb has grown up to be this amazing kid.”