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Parents Aracely and Francisco were thrilled to welcome a baby boy into their family of three girls in December 2018. Within a few days of their son Gamaliel’s life, he was diagnosed with a congenital heart defect known as hypoplastic left heart syndrome (HLHS).
In HLHS, the left side of the heart is underdeveloped, making it difficult for the heart to pump enough oxygenated blood throughout the body. A common treatment for babies with HLHS is a series of three open-chest surgeries to restore the function of the heart’s left side.
As a baby, Gamaliel underwent two open-chest surgeries, but entered heart failure before he could undergo the third. Doctors told Aracely and Francisco their son would need a heart transplant. He was admitted to Lurie Children’s Regenstein Cardiac Care Unit in August 2020, where a team of cardiac specialists was ready to take care of him while he waited for a new heart.
At Lurie Children’s CCU, Gamaliel stayed healthy and strong with medication and therapies so he would be in great condition for his eventual procedure. He worked with occupational and physical therapists, and had a feeding tube inserted to ensure he consumed enough food and water to grow and stay hydrated.
While Gamaliel’s parents and three older sisters prayed for him to come home, the COVID-19 pandemic prolonged the wait. Gamaliel’s very young age also affected his wait time. While infant patients typically wait two to four months for a heart, the pandemic has extended this to six months or more for many patients.
“At the start of the pandemic, we certainly didn’t think we would see families wait as long as 10 months for transplants,” said Nicole Brazg, APN, Heart Failure and Heart Transplant program. “It can be extremely emotionally taxing, so we made a conscious effort to change the way we counsel families. We encourage them to go home when possible so they can take care of themselves, and stay at the Ronald McDonald House for a good night’s sleep.”
“Gamaliel’s family was incredibly supportive of him as the months went on,” said Nora Hammond, APRN-NP, Cardiology. “Aracely rode the train across town every day to spend time with him while Francisco cared for the girls at home. They always stayed upbeat. That helped Gamaliel immensely.”
Together, the team is finding a silver lining of the extended wait times: More time to connect with their patients and the families who love them. “It’s led us to have even closer relationships with our patient families,” Nicole said. “They really lead us by setting the tone and letting us know where they are at emotionally so we can meet them there. With Gamaliel, we always told his parents, ‘We are just waiting for his perfect heart.’”
Finally, in June 2021, after nearly 10 months of waiting, Gamaliel’s parents received the call: His team had accepted a heart for him.
“The wait was hard on our family, but hearing that a heart was ready for him was one of the happiest days,” Aracely said. “His sisters cried with happiness.”
Post-transplant, Gamaliel made a remarkable recovery. Within days, his appetite increased and he had enough energy to drive his car around the unit and perform “Baby Shark.” Two weeks later, he was home again with his parents and sisters.
Today, Gamaliel continues to follow up with his cardiology team as he enters his toddler years in great health.
“We are very grateful to God, to his care team and to everyone who works at Lurie Children’s,” Aracely said. “We hope Gamaliel’s story inspires others to consider being organ donors.”
Lurie Children’s Regenstein Cardiac Care Unit (CCU) is a state-of-the-art 44-bed unit devoted to the care of young patients with cardiac disease. The Regenstein CCU is one of the few cardiac units of its kind in the nation, allowing each child to stay in the same private room from admission to discharge. The high-tech rooms adapt to the level of care the patient needs, and eliminates the need to transfer the patient to other units in the hospital. Our rooms are technologically equipped for intensive care while providing the family amenities of a regular acute care patient room. Cardiac patients have the same healthcare team throughout their hospital stay.