Miracle Kid: Judah Dantonio

Faith: A Key Player in Young Boy’s Heart Treatment

It’s a feeling that Nick and Liz Dantonio will never forget.

Loud beeps and alarms coming from the nursery where they delivered their first-born, Judah.

Doctors rushing toward the newborns.

Worriedness on the nurses’ faces as they scrambled to help the doctors.

Nick asking the care staff at United Memorial Hospital, “Is it Judah?”

Fear. Panic.

Warsaw, Wyoming County, residents Nick and Liz were elated after Judah’s birth just 24 hours earlier. Now, they were left wondering what went wrong. The prenatal ultrasounds were perfect. Judah was delivered at 40 weeks, on time and on schedule. Not even 24 hours later, he was struggling to breathe and was being transported from Batavia to a hospital in Buffalo for more testing.

The diagnosis: hypoplastic left heart syndrome (HLHS); a birth defect that affects blood flow through the heart because the left side of the heart doesn't form correctly. It’s one of the most complex cardiac defects seen in newborns and is very challenging to treat—his heart only had one pumping chamber, the right ventricle. Without treatment, HLHS is fatal, often within the first hours or days of life because the left side of the heart cannot support blood circulation to the body’s organs.

Judah would then be transported to UR Medicine’s Golisano Children’s Hospital, his third hospital in as many days, where he’d need surgery at just five-days-old.

A Promise

Nick and Liz had 70 miles between hospitals to discuss their emotions and come up with a game-plan for their son. To this day, they look back and credit the ride for their success as a couple and as a family.

“We made a promise that we wouldn't turn our backs on God, on each other, and that we would do whatever we could for Judah,” said Nick. “We later added another promise to rejoice for every baby we saw go home before Judah.”

Upon arrival at Golisano Children’s Hospital, they met with George Alfieris, M.D., where they were given a care plan from him and his team. The Dantonios were told that Judah would likely require three surgical procedures to reconstruct his heart and that eventually he may need a heart transplant. The first surgery Alfieris would execute shortly after their discussion.

“Judah was a very sick baby and it felt like he was constantly taking a step backwards,” said Regina Cable, a nurse practitioner on the pediatric cardiology team. “We were not sure he'd survive when we saw him for the first clinic visit.”

Surgery

Alfieris and his team performed Judah's first surgery aimed at rebuilding his aorta, creating one open outflow from his heart and adding blood-flow to his lungs. The surgery is a complex procedure—at that point, his heart was roughly the size of a walnut, further complicating matters.

“Surgery days are the hardest days—emotionally and physically—they’re just exhausting,” Nick said. “I can’t believe how much it took out of us.”

Judah began the recovery process, which usually takes a month or two to complete. But that wasn't the case for Judah—his chest remained open for two weeks after surgery because of swelling. He needed a breathing tube and was on a ventilator for a prolonged period of time to help him breathe easier. Judah’s lungs were struggling to provide air to his body. Physicians had removed the breathing tube for a couple hours, but every time they did, he would need to be re-intubated. After undergoing a bronchoscopy, a procedure done to see what Judah’s airways looked like, it was decided that he needed a tracheostomy. He also required a gastrostomy tube for feeding because he was having trouble gaining weight.

“A tracheostomy and ventilator are almost unheard of in Judah’s population,” said Cable. “Taking a baby home with a trach and a vent is very stressful on its own, on top of caring for a child with HLHS, it’s almost more than anyone could handle.”

“That was one of the hardest things, with a tracheostomy and a ventilator, now, when we eventually would get home, we would need 16-hour nursing in the house,” Nick said. “We went back to our first discussion we had in the car: it didn’t matter what it cost, we would do whatever it takes to give him the best chance to be healthy and grow old.”

Within hours of his tracheostomy the Dantonios noticed an immediate difference in Judah’s personality. He was beginning to turn the corner and was on the road to health. After five months spent in the pediatric cardiac intensive care unit (PCICU), Judah was finally heading home.

“He always had a smile on his face,” Nick said. “There were countless times his energy and happiness made us forget what our family was going through.

First Birthday

The second of Judah’s three surgeries took place on October 28, 2013. This procedure, called the Glenn, was performed to reroute blood circulation and reduce his ventricular workload. He was discharged from the second surgery on his first birthday, just 17 days after the procedure.

In February, 2015, Judah returned to Golisano Children’s Hospital after Nick and Liz noticed Judah had symptoms of pneumonia. However, tests revealed he had a respiratory infection impacting his heart function. During ultrasounds, providers noticed that his single right ventricle was severely depressed, leading the cardiology team to be concerned for his future. Conversation ensued about referring Judah for heart transplantation.

Each Day is a Blessing

Since 2015, Judah has done very well clinically. His function of the single right ventricle has improved with the help of several medications, allowing for his tracheostomy to be removed.

“As far as kids with his heart condition, he has had one of the more complex courses, yet he and his parents have always been so positive. I am so happy with how well he is doing currently,” said Carol Wittlieb-Weber, M.D., a pediatric cardiologist at Golisano Children’s Hospital. “He’s just a happy, adorable little kid who is lucky to have such amazing parents. They’re a pleasure to take care of.”

Judah is growing and loving life as a four-year-old boy. He’s seen by Wittlieb-Weber once every three months and they’re constantly working together to evaluate the best treatment options for Judah.

But for the Dantonios, they count each day as a blessing.

“There have been a few times during this journey where I've been sitting by his hospital bedside thinking, ‘Is this it?’ ‘Is this where it ends?’ ” Nick said. “Our faith has been a big part of why we were able to go through this and come out thriving in our relationship and as a family.”

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