Danilo's Story 

Danilo seems to have no fear. 

He takes on any challenge, outruns his older sister, Grace, and seems unstoppable.

Part of that – according to his parents, Erica and James – is from being a two-year-old boy.

But after being near-death several times and undergoing three heart surgeries, young Danilo also doesn’t have much left to fear.

He seemed fine when he was born, Erica remembers, but there was talk of a heart murmur. 

After a consultation with pediatric cardiologist Michele Monaco, MD, at Geisinger Wyoming Valley in Wilkes-Barre, doctors made the decision to send Danilo to Geisinger’s Janet Weis Children’s Hospital in Danville immediately. Life Flight® was called to expedite the trip so Danilo could receive advanced specialized care as soon as possible.

“Initially, when we were told he needed to be taken by Life Flight^®, we told them, ‘you have the wrong kid.  Our baby is fine,’” Erica says.  “He was four-weeks premature, and we had figured his lungs were a little underdeveloped and he’d be fine.”

But as healthy as Danilo seemed on the outside, he actually was struggling inside; he was suffering from a complex congenital heart defect.  His heart was not functioning properly, and the only treatment was open-heart surgery. 

“We determined that he would need a three-part surgery – a modified Norwood operation – where we essentially would change his pumping system,” explains pediatric cardiothoracic surgeon Kamal Pourmoghadam, MD.  “Unfortunately, patients with defects like Danilo’s aren’t expected to survive without such a surgery.”

“Dr. Pourmoghadam was so patient with us and understood that parents are overwhelmed,” Erica says.  “I think we went over it five times, what they were going to do.  They basically taught us what a normal heart looked like, what Danilo’s heart looked like, and what his heart would look like after the procedure.”

The first time Danilo’s parents were able to hold their young son was the morning of the surgery.  He had been in a protective hood until then and may not have survived outside of the equipment.  But at that point, Erica says, “he was going into surgery, and we didn’t know if he was coming back.”  They knew it might have been their last chance to say good-bye.

The complex procedure took most of the day.

When news did come, it was good news – but, unfortunately, the optimism was short-lived.  While the surgery was deemed a success, the night that followed was a challenge for Danilo – as well as his parents and the staff in the pediatric intensive care unit (PICU).  When the infant’s pressure dropped suddenly, he went into cardiac arrest – and sent his parents into a panic.

“We were sure he was gone,” Erica says.  “Dr. Pourmoghadam came running in and opened Danilo’s chest at the bedside.  His hands were the only thing that started his heart that night.”

The recovery after that first procedure was a long, tumultuous road that the family took day by day – sometimes hour by hour.  Danilo spent 72 days at Janet Weis Children’s Hospital, and while specialized medical equipment that was funded by Children’s Miracle Network helped keep him alive, the DVD players – also funded by Children’s Miracle Network – helped keep his mind off the barrage of tests and procedures he underwent.

Even after he went home, concerns were plentiful.  Danilo would turn blue when he was upset and cried.  Having spent the first part of his life in a hospital connected to a number of machines, he was a challenge to feed – which created more difficulties since his opportunity to thrive depended on his growth.

Then, the night before a scheduled heart catheterization, while Danilo and his family were staying in Danville, the young boy took a turn for the worst.  He turned completely blue and was taken to the emergency room.  He was outgrowing the fix from the first surgery, and doctors determined that there was no time to waste in performing the second surgery.

“That one was scarier because I don’t think anyone thought he was coming back from that second surgery,” Erica says.  “The nurses from the PICU sat on the floor outside and just cried with me.”

Despite the severity of – and fear surrounding – that surgery, Danilo did well and had a much shorter recovery period: seventeen days later, he returned home.  He continued to improve as the family prepared for the third surgery.

“For a baby who was going to need extra care, Danilo couldn’t have asked for more top-notch parents,” Dr. Pourmoghadam says.  “Mom and Dad really were on top of everything and helped him through it.”

Last year, Danilo completed the final surgery, and now faces no foreseeable procedures.  He still will need to be followed by a cardiologist, and may need an additional procedure in the future, but doctors expect him to do well for some time.

“Things like this change you as a person, and you have this new ‘normal,’” Erica says.  “You’re never as carefree as you were before because you’ve always got this on your mind.”  Still, she adds, it’s comforting to think that their son is scheduled for a somewhat “normal life” for at least a few years.

In that time, Danilo will continue to seek out new challenges.  As he continues to get older and stronger, he continues to find new ways to show how fearless he is. 

For Danilo’s family, however, nothing will compare with how fearless he already has been.

Danilo's story was featured during the 2008 Celebration broadcast on WYOU May 31 and June 1.