Overcoming the Odds with Expert Fetal Cardiology Care: Zeke and Zane’s Story
Zane had three open heart surgeries before he turned 3. And surprisingly, he had a more routine care journey than his brother, Zeke.
Zeke and Zane were both diagnosed with hypoplastic left heart syndrome (HLHS) before birth. As far as congenital heart diseases go, HLHS falls on the rarer end of the spectrum. 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 just about 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 Children’s Hospital Colorado 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 the Colorado Fetal Care Center (CFCC) at Children’s Hospital Colorado. The Heart Institute collaborates with the CFCC through the Fetal Cardiology Program. 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 doctors to review and confirm Zane’s diagnosis. Together with the family, our fetal and cardiology experts determined the best care for the remainder of Kayla’s pregnancy and devised a plan for after birth.
Two years later, when Kayla was pregnant with Zeke, she and her husband, Misael, received similar news at around the same time in the pregnancy. They returned to Children’s Colorado thinking they would be a little more prepared this time but no two HLHS diagnoses are the same.
What did remain the same for Kayla and Misael was the support and expertise of a care team that could give their baby the best possible chance. Their team at Children’s Colorado created another complete care plan unique to Zeke.
From the beginning, Zeke’s medical journey took a very different turn, and it seemed his case was much more severe than his brother’s. After struggling with heart failure for the first months of his life, doctors told his parents that Zeke would need a heart transplant immediately.
Kayla and Misael sat outside our Cardiac Intensive Care Unit (CICU) facing a devastating diagnosis, when, like a scene from a movie, a nurse ran out to tell them they had found a heart donor. Within one day, our heart transplant team performed the transplant 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.”
Conditions this serious impact the whole family, both inside and outside the hospital. Kayla and Misael say they have felt the support of the entire team at Children’s Colorado and continue to feel the care that is provided for the whole family. Numerous doctors, nurses, technicians and other specialists provided the clinical care that saved Zane and Zeke’s lives. And our child life specialists, coordinators, social workers and educators helped organize that care and prepared them for the transition to go home.
Every year in May, the family celebrates Zeke’s “Heartaversary” — an extra special milestone that 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,” says Kayla, “it’s shaping a future in which my boys can be kids and grow up to pursue their dreams.”
For more information the Fetal Cardiology Program, visit our website or call 720-777-4463.
*This blog post is sponsored by the Heart Institute at Children’s Hospital Colorado. Consistently ranked in the top 10 pediatric cardiology programs by U.S. News & World Report, the Heart Institute cares for all congenital and childhood heart diseases. The program is the largest in the Rocky Mountain region and maintains exceptional outcomes, with expertise in both open and minimally invasive heart surgery. The vast experience of their multidisciplinary heart team allows them to continue to offer individualized care to each patient they treat across the continuum, from before birth to adulthood.