Jesus' story
Parents put their trust in doctors and care team at Methodist Children's | Heart Institute after son's heart defect diagnosis.
Jesus Sr. and Yulissa spent months by their newborn son’s side, putting their trust in the doctors and care team at the Methodist Children’s | Heart Institute.
The new parents never imagined the challenges their son, Jesus Jr. would face once they learned he was born with a rare and severe heart defect known has Hypoplastic Left Heart Syndrome (HLHS). HLHS is a severe congenital heart defect in which the left side of the heart is severely underdeveloped. HLHS is often fatal without early intervention.
Yulissa experienced a normal pregnancy. Ultrasounds never revealed her son’s severe heart defect. It wasn’t until a few hours after her son’s birth when she noticed he was blue. Almost immediately, baby Jesus Jr. and Yulissa found themselves on a plane traveling from a hospital in Edinberg, Texas to Methodist Children’s Hospital in San Antonio for emergent care.
Life-saving care
“I remember when we first got [to Methodist] we were scared,” Yulissa recalls. “The doctor explained to us with great detail. He made a drawing of what a healthy heart looked like, and then Jesus’s heart.” Typically, the first heart operation for HLHS is a complex operation called the Norwood operation, which involves the use of a heart-lung bypass machine.
“The Norwood operation is the most complicated of the three single-ventricle treatment surgeries to correct single ventricle heart defects and the most risky,” Chief Pediatric Cardiovascular Surgeon, Dr. John Kupferschmid said. “Currently, most major pediatric heart centers offer a survival rate of 75 percent or more.”
But when Jesus Jr. arrived in San Antonio he was suffering from cardiogenic shock, renal failure and liver failure. Because of his grave state, the team at the Heart Institute decided to palliate Jesus Jr. with an operation that did not require the use of heart-lung bypass machine. This initial operation allowed him to recover from his multi-organ failure.
Over the next few weeks, the ICU team worked closely with the cardiology and cardiac surgery teams to prepare Jesus Jr. for the big Norwood operation. He recovered remarkably well within six weeks after he underwent the Norwood operation.
“The doctors at Methodist Children’s Hospital are lifesavers,” Yulissa said.
The hospital stay
Jesus Jr. spent 3 ½ months in the hospital. During that time, Yulissa never left.
“All of the nurses became my second family. I didn’t have anyone to visit me,“ she said.
One of her fondest memories during their hospital stay was when she was able put clothes on her baby for the first time. He was one month old.
At two-months-old, his nurses had the idea of getting Jesus Jr. a wagon so that he could take a break from being cooped up in his hospital room. But they took it a step further and made the necessary accommodations to allow Yulissa to take her son outside to experience fresh air and sunshine for the first time.
Reaching milestones
“He’s my super hero,” Yulissa said. “I know he needs me and I need him. He makes me strong.”
Yulissa made it her mission to help her son reach developmental milestones so that they could go home.
“The doctors told me that he was going to need a G-tube because he wasn’t eating much. I didn’t want that for my son,” Yulissa said.
It turns out Jesus Jr. didn’t want that either. In the nick of time, he began to eat the proper amount of milk, avoiding the gastrostomy tube procedure. He was ready to go home.
“He loves balls. He loves to blow kisses and dance,” Yulissa said. Jesus Jr. is thriving. He’s in occupational and physical therapy at home. His next surgery is scheduled for early 2020.
Doctors are confident Jesus Jr. will do well with the bidirectional cavopulmonary anastomosis or ‘Glenn’ operation. This next surgery less complicated than the first, multi-step Norwood surgery, but it still requires the expertise of highly experienced congenital surgeons to build successfully upon the previous procedure.