Zeke and Zane: Overcoming Long Odds with Expert Fetal Cardiology Care

Zane had three open heart surgeries before he turned 3. And surprisingly, in his family, he’s the brother who had the more routine care journey.

Zane and his brother, Zeke, were both diagnosed with hypoplastic left heart syndrome (HLHS) before birth. HLHS is a rare congenital heart defect (CHD) in which the left side of the heart doesn’t develop properly. The odds that either boy would have the condition are low — roughly 1 in every 3,800 babies are born with it. The likelihood that their story would play out how it did is probably impossible to calculate.

“Seeing two brothers have HLHS is extremely rare and even more rare is how differently the condition presented in each child,” says cardiothoracic surgeon Max Mitchell, MD, who performed the procedures on Zane and advised on Zeke’s care. “The entire family has shown incredible resilience in the face of a challenging diagnosis, and I am personally honored to be a part of their story.” 

Zane was diagnosed during a routine ultrasound at 20 weeks gestation and his mom, Kayla, was immediately referred to our Colorado Fetal Care Center. At their first appointment, the family met with a complete team of fetal and pediatric heart specialists, maternal fetal medicine experts, genetic counselors and other experts in one place to review and confirm Zane’s diagnosis. Together with the family, our fetal experts determined the best care for the remainder of pregnancy and after birth. They discussed surgery and its potential risks and outcomes.

Comprehensive care from the start ensured a smooth, coordinated transition when Zane was ready to meet the world. Zane was born with a full team by his side. His caregivers planned for this day and quickly brought him to the Cardiac Intensive Care Unit (CICU) where he had his first of three successful heart surgeries at 5 days old.

A second hypoplastic left heart syndrome diagnosis

Two years later, when Kayla was pregnant with Zeke, she and her husband, Misael, got the same crushing news at the same moment in the pregnancy and returned to our Center. They thought they were prepared, but no two HLHS diagnoses are the same.

What remained the same for Kayla and Misael was the support and expertise of a care team that could give their baby the best possible chance. They created another complete care plan from day one.

Like Zane, Zeke was born at the Colorado Fetal Care Center and had heart surgery soon thereafter — Zeke was 3 days old. Unlike Zane, Zeke struggled shortly after surgery. His heart stopped and his heart care team put him on life support for a month.

Thankfully, Zeke recovered and grew strong enough to go home. But after two months at home, he had trouble breathing. He ended up back with our pediatric heart experts where his heart stopped again. He stabilized, but at just 4 months old, Zeke was in heart failure. His doctors quickly put him on the heart transplant list, and for several excruciating months, his family waited for a new heart.

Then one day, Kayla and Misael got a call, but not the one they were hoping for. Zeke’s care team asked them to come to the hospital and informed them that his health was so poor that he only had about 48 hours to live.

Kayla and Misael sat outside the CICU staring down the worst outcome parents could imagine. Then, like a scene from a movie, a nurse came running out, saying they had found a heart donor.

Within one day, our heart transplant team performed the transplant surgery.

Thriving after HLHS surgery

Now Zane, 6, and Zeke, 5, are living lives the odds said were unlikely. They’ve both had multiple surgeries, plenty of follow-up care with different specialists and even spent time in the hospital together, but they don’t let HLHS slow them down.

“We don’t put limitations on them unless it’s for their safety,” says Kayla. “Go do what you want to do and know your limits.”

Zane is in first grade and loves Spider Man and riding rollercoasters. Zeke just started kindergarten and likes Mickey Mouse and trying to keep up with his big brother. They both love spending time with their sisters, Leah and Zaylee. Their parents are grateful any of this is possible.

“Both of my boys have overcome so much and have come so far with their heart conditions despite the challenges they’ve faced,” says Kayla. “They’ve shown incredible resilience and strength.”

Kayla and Misael have also felt the support of the entire team that cares for their whole family. Numerous doctors, nurses, technicians and other specialists provided the clinical care that saved Zane and Zeke’s lives. And conditions this serious impact the whole family, both inside and outside our hospital. Our child life specialists, coordinators, social workers and educators made care easier for the whole family and prepared them for the transition when the boys were ready to go home.

And every year in May, the family celebrates an extra special milestone. Zeke’s “heartaversary” marks the day he received his donated heart. His family celebrates his second chance at life and honors the donor and the donor’s family who selflessly gave him the greatest gift.

“With every act of kindness and generosity, Children’s Colorado isn’t just changing lives, it’s shaping a future in which my boys can be kids and grow up to pursue their dreams,” says Kayla.