Zane had three open heart surgeries before he turned 3. And he’s the brother in his family 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 disease (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 Max Mitchell, MD, cardiothoracic surgeon at Children’s Hospital Colorado, 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 personally am 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 the Colorado Fetal Care Center at Children’s Hospital Colorado. From the moment their family entered the Center’s doors, their robust team of fetal and pediatric cardiac specialists, maternal fetal medicine experts, genetic counselors and more gathered together in one place to confirm and review Zane’s diagnosis. Together with the family, determined the best care for the remainder of pregnancy and for the moments well after, including surgery and its potential risks and outcomes.
Thorough and comprehensive care from the start ensured a smooth, coordinated transition when Zane’s birth day arrived. Zane was born with a full team ready to care for him. The team had planned for this day and swiftly brought him to the Cardiac Intensive Care Unit where he had his first of three successful heart surgeries at 5 days old.
A second HLHS 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 the Colorado Fetal Care Center. While no two HLHS diagnoses are the same, Kayla felt some comfort in her familiar journey and surrounded herself with what every mother could hope for – a care team that could give her baby the best possible chance.
Again, the team came together and devised a comprehensive care plan from that moment forward, and like Zane, Zeke was born at the Colorado Fetal Care Center. He too had heart surgery soon thereafter at just 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.
Zeke recovered and grew strong enough to go home. But after two months at home, he had trouble breathing. He ended up back with the pediatric heart experts at Children’s Colorado 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 his family waited for several excruciating months.
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 Cardiac Intensive Care Unit staring down the worst outcome parents can imagine. Then, like a scene from a movie, a nurse came running out, saying they had found a heart donor.
The heart transplant team at Children’s Colorado performed the transplant surgery within a day.
Thriving with HLHS
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 is in 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 — from the doctors, nurses, technicians and other experts who provided the clinical care that saved Zane and Zeke’s lives to the child life specialists, coordinators, social workers and educators who made care and life easier for the whole family inside and outside the hospital.
And every year in May, the family celebrates an extra special milestone. Zeke’s “heartaversary” marks the day he received his donated heart, 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.
