Holes in his Heart: Zachary’s Story

Ventricular Septal Defect

Doctors at Chesapeake Regional Medical Center induced Christine Tokarczyk two weeks early thinking that Zachary, her third child, was going to be a 10-pound baby. Following delivery, everything was normal. It wasn’t until her husband, Todd, mentioned to her that Zachary never quite “pinkened up.” Zachary was cleaned up and given oxygen in an attempt to restore his color. When he showed no change, his doctors consulted cardiologists at Children’s Hospital of The King ‘s Daughters. “They tried to find the issue and gave him medication to see what they could find,” Tokarczyk recalls. “But then they told me they would be transferring to CHKD.” He was sedated and moved to CHKD where Dr. Michael Vance diagnosed him with transposition of the great arteries, a ventricular septal defect (VSD).

“From a mother’s standpoint, you expect a normal pregnancy—a baby with 10 fingers and 10 toes and you look to see whose eyes he has. All of that was taken from me. My world was crushed. It just stopped,” she says.

Zachary was admitted into the NICU and given medications to hold the flap in his heart valve open. “He responded badly,” Tokarczyk remembers, “He blew like a balloon and had rashes.” They gave him oxygen and explained to her that they would need to place a stint to hold his valve open so that it can be repaired. Drs. M. Ali Mumtaz and Felix Tsai explained to Tokarczyk that with his ventricular septal defect “his plumbing was reversed” meaning that his pulmonary artery and aorta were flipped.

“When this happens, you breath in and the oxygen goes from the heart to the lungs and back to the heart as opposed to going out to the rest of the body like a normal system,” says Tokarczyk.

While it’s not an uncommon problem in infants, it can become severe. In Zachary’s case, he needed surgery four days after birth. And while his surgery was successful—a 12-hour procedure to resolve his ventricular septal defect (VSD)— all were closed but one.“All but one hole closed. They finished in nine hours and every hour they let us know Zachary’s status. They said it was textbook,” Tokarczyk says.

The surgery’s success was proven by the restoration of his color and his high oxygenation levels—98-99 percent up from the 70s—and he was learning to swallow, feed and expel fluids. Two weeks later, he was home. Tokarczyk says that he still requires annual checkups with his cardiologist and she lives in constant fear worrying whether his heart growth will keep up with his body’s growth.

“Right now he can be a normal kid and run around, but we do have to monitor whether he gets winded or overheated, or over saturated with sweat. He also catches every cold during cold season so we have to take extreme care.

“His teenage years will tell the true story as his body develops. For now, it’s one battle after another—heart battle and immune system battle—and now he’s having some complex gastrointestinal issues.” she says.