Michelle and Jim Pliske's baby, David, was diagnosed with a potentially fatal congenital heart defect 36 hours after birth. The care that he has received from a multitude of caregivers in a variety of specialty programs at Lurie Children's Heart Center, the region's largest children's heart center, illustrates that world-class care depends on the generosity of donors.
David's defect is called hypoplastic left heart syndrome. The left side of his heart was underdeveloped and unable to effectively pump blood through his body. Because of the hospital's special expertise in treating babies with a variety of congenital heart disease, he was referred to Lurie Children's Heart Center from a hospital in South Bend, Indiana.
"We were in total shock," says David's mom, Michelle. "One minute we were on the verge of leaving the hospital to take our baby home, and the next they were telling us a helicopter was on the way to take him to Chicago."
When Michelle and Jim arrived in Chicago about 90 minutes after David, he had been taken to the hospital's Regenstein Cardiac Care Unit (CCU). This unique 36-bed facility enables patients to stay in the same private room and receive care from the same doctors and nurses from the time they're admitted to the time they're discharged.
A cardiac intensivist explained that the best course of treatment for David was a series of three surgeries known as the Fontan procedure. The heart surgeons at Lurie Children's are experts in performing the various stages of the Fontan surgeries, and the hospital's cardiologists have the expertise and skill to care for these patients from birth to adulthood.
David underwent the first stage of the procedure when he was two weeks old. After nearly 60 days in the CCU, David finally went home. He was followed by cardiologists and advanced practice nurses in the HeArT (High Acuity Transition) Program, which provides outpatient follow-up care for infants with complex congenital heart disease.
David was also enrolled in a home monitoring program. His parents helped track his progress between clinic visits — providing data that was shared with a national research collaborative dedicated to improving standards of care and outcomes for children between stages of the Fontan procedure.
At six months of age, David underwent the second of his three surgeries. The final surgery is scheduled for Spring 2018 when David will be nearly 3 years old. Even with successful surgery, his parents know that at some point their son will very likely need a heart transplant.
"A transplant for David is not a case of 'if' but 'when,'" says Michelle. "But he is doing great. He runs around, climbs on everything and loves to wrestle with his two older brothers. He's a typical active and mischievous 19-month-old."
David has also benefited from the Heart Center's unique specialty clinics, which are largely made possible by philanthropy. These include the Single Ventricle Center of Excellence and the Neonatal and Cardiac Intensive Care Follow-Up Clinic. A new program under development, the Neo-Heart Developmental Support Program, will extend the Follow-Up Clinic's reach by screening for and addressing neurodevelopmental and psychosocial defects in patients age 6 and up.
While David's treatment is ongoing, his family is comforted by the continuity of care he has received from his doctors and nurses.
"We didn't know much about Lurie Children's when we first started our journey, and David could have gone to another hospital," says Michelle. "But we're so happy he went there. We really connected with his doctors and nurses, and they have become our second family.”
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