Two Hearts, One Diagnosis

Brothers Zane, age 6, and Zeke, 4, are bound by more than just blood; they were both born with hypoplastic left heart syndrome (HLHS), a rare congenital condition in which the left side of the heart doesn’t develop properly.

Despite having the same diagnosis, Zane and Zeke have had very different treatment plans, each experiencing the specialized cardiac care they need at Children’s Hospital Colorado.

Early Diagnosis Leads to Lifesaving Care

Zane was diagnosed with HLHS in utero when his mom had a routine ultrasound at 20 weeks of pregnancy.

“As soon as we found out, we were referred to the Colorado Fetal Care Center (CFCC) at Children’s Colorado,” said Kayla, the boys’ mom.

At Children’s Colorado, rare conditions are treated with rare expertise; Kayla, her husband, Misael, and her unborn baby were in the right place. 

Zane was born in the CFCC and was immediately taken to the Cardiac Intensive Care Unit (CICU) at Children’s Colorado. Just 5 days later, he had his first reparative surgery. Over the next 2.5 years, he had two more surgeries, both successful.

When Kayla became pregnant again, she was told that the odds of having another child with a severe heart complication were highly unlikely.  But at Kayla’s 20-week ultrasound, she and Misael received devastating news – their second little boy also had the same issue with his heart: HLHS.

Once Kayla and Misael got over the shock of having not just one child, but two, with the same rare condition, they realized they knew what to expect since they’d been through it before. However, with their second son, Zeke, their path would prove to be much bumpier.

Like his brother, Zeke was born in the CFCC and taken to the CICU immediately. He had his first reparative surgery when he was just 3 days old. Shortly after the surgery, Zeke’s heart stopped, and he was put on life support for a month.

Once he was stabilized, Zeke slowly started to get stronger and was able to go home. Not long after he got home, he started having trouble breathing, and Kayla took him to the emergency room at Children’s Colorado, North Campus, close to their home in Erie, Colo.

From there, Zeke was rushed by ambulance to Children’s Colorado on the Anschutz Medical Campus, and when he arrived, his heart stopped again.

The little boy, who was just 4 months old, was in heart failure. Doctors quickly decided to put him on the list for a heart transplant. After months of waiting, juggling work and hospital stays and hoping their little boy would get a new heart, Kayla and Misael received a call they weren’t ready for.

Zeke’s care team needed them to come to his room immediately. They were told that their baby’s health was in such a perilous condition that he had roughly just 48 hours to live if he didn’t receive a donor heart. While sitting outside of the CICU, with the news that their little boy might not make it to his first birthday sinking in, Kayla and Misael were forced to consider the unimaginable. Then, like a scene from a movie, a nurse came running out, saying they had found a heart, and his transplant surgery was completed within a day.

Every year since, on May 17, Zeke and his family celebrate his ‘Heartaversary,’ his second chance at life, while honoring the donor and the donor’s family who selflessly gave him the greatest gift.

Advancing Treatments for Congenital Heart Defects

Congenital heart defects, or CHD, are heart conditions present at birth – and they are the most common birth defects. Infants born with CHD have an abnormal structure to their heart, which can affect how it works and how blood flows from the heart to the rest of the body. About 1 out of every 100 babies is born with a CHD.

HLHS, which both Zane and Zeke have, is even rarer, affecting 1 in roughly every 3,800 babies. Many of these babies, including Zeke and Zane, are treated by experts at the Heart Institute at Children’s Colorado, one of the largest and highest volume pediatric and congenital cardiology programs in the country.  

In decades past, most children with serious or critical CHDs did not survive. But with advancements in diagnostic technologies, research, cardiac care and surgical treatment, CHDs are being diagnosed earlier and treated more successfully through innovative techniques. As a result, children born with a CHD are living longer, healthier lives. In fact, there are now more adults than children living with CHD.

“Both of my boys have overcome so much and have come so far with their heart conditions despite the challenges they’ve faced. They’ve shown incredible resilience and strength. I know that philanthropy has played a crucial role in their journey – providing resources, research and support – that have helped with their quality of life and paved the way for brighter tomorrows,” said Kayla.

Philanthropy Provides Support for the Heart, Mind and Whole Family

Children’s Colorado experts took lifesaving measures to keep Zane and Zeke alive at a very young age. As they are now growing and getting stronger, the toll of surgery, cardiac arrests, medications, and the amount of time spent in the hospital have dramatically impacted their lives and those of their family, including their big sister, Leah.

When Zane was born, Leah was just 3 years old. Because Zane was in the hospital for so long after he was born, Leah couldn’t see her brother when he was an infant. Then, once he was home, every time he’d have an appointment, she’d cry and get upset thinking he wouldn’t be able to come home for a while. Additionally, Zane and Zeke have anxieties around coming to the hospital. As they get older, it gets a bit easier, but when the boys see the hospital, they still know they may be getting a blood draw or might have to stay the night, being away from their parents and family.

Taking a child home after they’ve had heart surgery, especially those who have an HLHS diagnosis, also has challenges for the parents caring for them. There’s anxiety around what to do if your child gets sick or determining at what point you take them back to the hospital. At Children’s Colorado, family education and social and medical support for families of infants with HLHS (and other single ventricle heart disease) are a significant part of our care plan. These are incredibly fragile infants with a historically high risk of death after discharge from the first surgery.

Donors Make a Difference in Families’ Wellbeing

By funding programs like our Interstage Program within the Heart Institute, donors can help families through extensive education and preparedness prior to discharge so that they can look for and identify danger signs. Philanthropic support is crucial because none of the time and resources required to educate and prepare families is billable to insurance companies.

Likewise, mental health care reimbursement from insurance companies is frustratingly poor in Colorado, which results in a lack of coverage for such services available to families of patients receiving cardiac care. Philanthropic support for the Wellness Program in the Heart Institute can fund and support training a cardiac psychology fellow who is critically important to the success of that program. More support is needed to make sure patients and families are getting the well-rounded care, and mental health support during and following a life-threatening diagnosis.

The impact that heart problems have on a child and their family can be overwhelming. The Wellness Program strives to decrease the burden for children and families through personalized care and supportive services that include mental health treatment, medical teaching, social and spiritual support and even therapeutic play and music therapy. Children’s Colorado’s goal with the Program is to provide ideas, time, space, and resources that help patients thrive while they undergo medical treatment, and long after.

Reducing Side Effects to Improve Quality of Life for Heart Patients

The effects of early interventions to save both Zane and Zeke have impacted almost every area of their lives. The surgeries, procedures, and interventions they had in their first couple years of life were mainly focused on their hearts and were aimed at keeping them alive. In some cases, the pumping of blood and oxygen to the brain, heart, and lungs neglected things like the digestive system.

As a result of these lifesaving interventions, both boys now need help getting nutrients because they have challenges with eating. They both receive nutrition through tube feeding, either directly into their stomachs, or through their intestines. With open heart surgeries, which both boys had, there’s also a significant risk of paralyzing a vocal cord. Both boys have at least one paralyzed vocal cord, which also impacts their ability to eat.

Zane has also had many serious pulmonary complications, and he has been getting supplemental oxygen off and on for his whole life.

With philanthropic support we can drive groundbreaking research to improve the quality of care for patients and reduce the harmful side effects that come with lifesaving measures—both while they’re in the hospital and as they grow.

Genetic Testing Today Impacts Heart of Care Tomorrow

Precision medicine is transforming how we provide personalized heart treatment for pediatric patients by looking at genetics, age, anatomy, markers circulating in the blood, how the patient’s heart muscles respond to their underlying heart disease and other factors for every child who comes through our doors. These datasets help our team understand whether a patient will respond well to the therapies we propose and identify patients at higher risk so we can personalize treatment for them.

Zane and Zeke have had multiple rounds of genetic testing and though a genetic link for their identical diagnoses hasn’t been identified, their participation in research could improve outcomes for other kids in the future. It could also help them make decisions when they’re adults if they carry a genetic marker for this kind of condition. With donor support, our cutting-edge Precision Medicine Institute lab, a national leader in data analysis and the development of innovative testing, will continue to make significant advances that impact care for kids like Zane and Zeke.

Vision for the Future

Zane and Zeke continue to be followed closely by the experts in the Heart Institute, the Digestive Health Institute, the Breathing Institute and Child Life. Despite regular appointments, they do not let their heart conditions slow them down. Zane is in kindergarten and loves sports, including watching the Colorado Avalanche. Zeke is usually trying to keep up with his big brother and loves Mickey Mouse.

“Both of my boys have overcome so much and have come so far with their heart conditions despite the challenges they’ve faced,” said Kayla. “They’ve shown incredible resilience and strength. I know that philanthropy has played a crucial role in their journey – providing resources, research and support – that have helped with their quality of life and paved the way for brighter tomorrows. 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.”

A very special donor is at the center of every transplant story. We thank the many families who help make our extraordinary care possible.