13 Taking Heart

Taking heart (1)

Doctors knew right away that something was amiss with Fabian Berrios’ heart when he was born.

“They took him from my hands,” his father, Miguel, remembers. “They said the baby has a murmur and they took him.”

The newborn and his father were rushed from the hospital in Fairbanks to Portland where three days after his birth, doctors were performing the first of several open-heart surgeries on the infant. His wife, Ilea, had just given birth by Caesarean section after what seemed like a normal pregnancy and had to stay behind in Alaska, waiting for a phone call that would tell her what was wrong with her newborn son.

After being diagnosed with two congenital heart conditions almost four years ago, the toddler has undergone numerous medical procedures in hospitals away from his birth home. Following a complicated tracheotomy, he had to be paralyzed him for a week to ensure a fast and safe recover. He is now without a trachea and the ability to speak. He’s already had two open-heart surgeries to correct his heart defect and recently had a catheter inserted in his heart to prepare him for a third. The working side of his heart labors twice as hard as a normal heart and the oxygen levels in his blood are severally depleted. Otherwise, Fabian looks like a normal boy with the average weight and size for his age. While he may play like a normal child, his mother admits he tires easier than his peers.

For Fabian, this is a normal life. However, before he was born, the Berrios family had a life free from hospital visits in faraway cities. Now the family lives on Miguel’s income as a civilian employee working in logistics at Fort Wainwright after Ilea quit her job to concentrate on caring for Fabian.

“It’s been a little rough,” Miguel admitted.

As if dealing with Fabian’s illness wasn’t enough, Miguel left on April 21 for a yearlong deployment to Kuwait, leaving Ilea to take care of their two sons and four dogs. She will feel her husband’s absence as she handles Fabian’s recovery from hopefully his final open-heart surgery in May. Meanwhile, to prevent his older brother from seeing his younger brother recover from yet another surgery, 7-year-old Angelo will get to spend the summer with his grandfather in New York and in his family’s homeland of Puerto Rico.

“I don’t want him to be worried,” Ilea said. “He knows that his baby brother is missing one part of his heart and they’re trying to fix it.”

While looking for ways to cope with challenges that come with Fabian’s heart defects, Miguel contacted Wish Upon The North Star (WUNS) after finding the Alaskan charity online. WUNS is an all-volunteer charity formed by Alaskans in 1983 that serves Alaskan children with life-threatening illnesses. Over the years they’ve granted wishes to countless kids including sending an 11-year-old girl with a spinal cord injury to Disney World, buying digital camera equipment for a girl with cancer and flying a 13-year-old boy with cystic fibrosis to Hawaii.

The wishes provide relief for not only the children suffering from a life-threatening illness, but the families who accompany the child on the trip. While children often adapt to a world filled with illness because they’ve known little else in their short life, their condition drastically alters the life of their family. For parents, there is the struggle to stay positive as they sit in the hospital watching their child sleep with machines interrupting the peace, while helping their child struggle with what should be a simple task such as walking or breathing. Listening to Fabian’s cries while she held his hand as the anesthesia took affect before his latest procedure was agonizing.

“Looking at him go through this is really, really hard,” Ilea said.

Life goes from yearly family vacations to keeping the financial demons at bay while you fight to keep your child alive. WUNS provides help to deal with the emotional pain that comes along with the physical pain.

In 2010, WUNS received a $26,000 boost from the Alaska State Troopers Adventure Relay to help grant wishes for several children and their families that are part of the charity’s program. The more than 500-mile relay across Alaska for public safety individuals and their family and retirees was not only an epic adventure, but a chance to carry on a long-standing tradition of stepping up to help vulnerable Alaskans in crisis. The second annual relay will kick off in Fabian’s hometown on June 13 and will end in Soldotna on June 17. The relay is another way to help someone in need that officers wouldn’t have otherwise met during their duties. That help has now gone beyond monetary as Alaska State Troopers in Fairbanks have stepped in to help the Berrios family.

Trooper Lt. Lonny Piscoya, deputy commander at D Detachment in Fairbanks, was tapped to help the Berrios family get their wish. Piscoya, a father of six, didn’t expect the emotions that surfaced when he became involved. He didn’t know the severity of Fabian’s condition until Ilea explained how the little boy’s life was threatened by hydroplastic right heart syndrome and tricuspid atresia – meaning  the right side of Fabian’s heart and its’ tricuspid valve never developed, prohibiting it from pumping enough oxygen-rich blood to meet his body’s needs.

“It was very moving when I went into the house for the first time,” Piscoya said. “I hadn’t thought about that part of that. It totally blew me out of the water.”

Piscoya did the initial interview and subsequent meetings with the family that is part of the WUNS process to help them get the wish. The family has asked to have the boys’ room remodeled because it is not conducive to Fabian’s condition or for a growing boy. He needs a bed to replace the crib he still sleeps in and needs a humidifier for his condition.

“He needs to be more comfortable,” Ilea said. “We wanted to set up everything during his surgery so when he comes back he’ll have his room really nice for him.”

They also asked that the room is painted for Fabian’s return, something Piscoya will organize.

While Fabian may never have a normal childhood and his family may be dealing with his medical condition for many years to come, they try to keep things happy and light for their two young children. While the upcoming surgery won’t give Fabian a normal heart, it should greatly increase the oxygen flowing through his body. And if everything goes well, Fabian will start going to school in August.

In the meantime, Ilea will to continue keep busy nurturing Fabian back to health and staying upbeat for both sons while her husband is half a world away.

 

 

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