The moment the ultrasound technician left the room in the middle of her 24-week scan in the summer of 2011, mom-to-be Christina Schachte feared she was going to find out more than just her baby’s gender. She was right, but it wasn’t until the next day in a specialist’s office in Daytona Beach that she learned her baby boy had multiple heart problems that would endanger his life from the moment he was born, and require several complex, open-heart surgeries to repair.
Three months later, little Derrick Schachte came into the world at Baptist Medical Center Jacksonville with four major heart defects called hypoplastic left ventricle, dextrocardia, pulmonary atresia and ventricular inversion. The left side of his heart, including the mitral valve and left ventricle was underdeveloped; his heart pointed to the right instead of the left; the valve connecting his heart to his lungs was not formed; and his left and right ventricles were switched. This complex set of conditions was life-threatening for Derrick and required urgent surgical intervention.
He immediately was taken to the Wolfson Children’s Hospital’s high-level Newborn Intensive Care Unit (NICU) at Baptist Medical Center Jacksonville to be closely monitored. Within the week, the pediatric heart surgery team at the C. Herman and Mary Virginia Terry Heart Center at Wolfson Children’s Hospital took him in for his first surgery to put in a Blalock-Taussig shunt, a temporary tube that directs blood flow to the lungs so it can be properly oxygenated until the baby is old enough for corrective surgery. After a week, his blood oxygen level was still too low, requiring another trip to the Cardiovascular Operating Room at Wolfson Children’s to patch open a narrowed area in his pulmonary arteries so more blood could get to the lungs.
While this surgery was successful, Derrick began to develop blood clots in both of his legs, requiring him to be placed on a blood-thinning medication. After four months, though, clots accumulated in his shunt, necessitating its replacement with a larger one that was laced with the blood-thinning agent Heparin. For Derrick to survive this surgery, his pediatric heart team had to put him on an extracorporeal membrane oxygenation (ECMO) machine, which provides heart and lung support and preserves the oxygen levels in the blood.
“Derrick is definitely one of the most complex cases I’ve seen,” said Eric Ceithaml, MD, chief of Pediatric Cardiovascular Surgery at Wolfson Children’s Hospital and UF Health Jacksonville, who together with his colleague, Michael Shillingford, MD, performed all of Derrick’s surgeries. “He had extremely complex cardiac anatomy – only one pumping chamber, no blood flow going to the lungs in the normal way, and his pumping chambers were switched so he had to undergo multiple operations to take care of that. In addition, he has an immunodeficiency disorder that makes him more prone to infection, as well as a condition that causes him to create blood clots. In the first year of his life, we worked to stabilize him so we could go in later and address his heart issues.”
In October 2012, Derrick’s pediatric heart surgery team performed a second major operation to further separate blood flow to the lungs. The Bidirectional Glenn procedure redirects oxygen-poor blood from the upper part of the body to the lungs by disconnecting the superior vena cava (the large vein carrying un-oxygenated blood to the heart from the upper half of the body), and redirecting it into the pulmonary arteries.
Other than minor complications related to his low immunity that required him to take antibiotics to keep infections at bay, Derrick did great following this surgery and received follow-up monitoring every three months at the Wolfson Children’s Specialty Center in Daytona Beach to keep tabs on his progress until he was big enough to have his final corrective surgery.
The final operative procedure was performed in June 2015. The Fontan procedure diverts oxygen- poor blood from the lower half of the body to the lungs so no un-oxygenated blood goes through the heart. That way, his heart’s only job is to pump oxygenated blood out into the body. After a stay in the Cardiovascular Intensive Care Unit at Wolfson Children’s Hospital, Derrick was back home and on the mend, and doing well.
“He’s full of energy! Some three year olds don’t do half the things he does,” said his mom, Christina. “He gets winded and tires easily, though, so we try to spend as much time as possible outside without overdoing it. I’ll admit I’m a little overprotective. I don’t want anything to happen to him. I think he’s strong enough, but it just scares me.”
Enrolling Derrick in pre-kindergarten this fall likely will be delayed another year until Christina feels comfortable taking him out of the Daytona Beach-area medical day care he currently attends, which is staffed by nurses who are fully trained in the event something happens. But she has no doubt that when he finally does start school, he will have a ball.
“He’s an amazing kid and he loves people. He’s always smiling,” said Christina. “I want him to experience life, and my wish for him is that he can live as long as possible.”
For children like Derrick born with multiple issues, including a single ventricle that is taking on the work two should be doing, there is the chance that it eventually will wear out and he may need a heart transplant. But for now, his heart team at the Wolfson Children’s Specialty Center in Daytona – the same ones he saw in Jacksonville – is keeping an eye on him, a huge convenience for the Schachte family since it’s only 10 minutes from their home.
“Derrick is a fighter. With the incredible complexity of his heart defects and other issues, it’s a miracle that he’s still here. The deck has been stacked against him numerous times, and he’s come through,” said Dr. Ceithaml. “It’s also a testament to the teams here at Wolfson Children’s including pediatric cardiology, cardiothoracic surgery, immunology and hematology, who have all pulled together for this boy.”