Starting Anew: Josiah’s Story
By Erica Gadbois
Josiah Sanarez has heart, and a healthy one at that. And for this 4-year-old, that’s a newfound and life-changing thing.
While awaiting the birth of their son, Josiah’s parents, Tonia and Jomel Sanarez, knew that he had a congenital heart condition and would need surgery just a few days into life. Physicians told the Sanarezes, who were lifelong residents of the Big Island of Hawaii, that area hospitals would be less equipped to address Josiah’s complex pediatric surgical needs. They recommended Tonia travel to San Diego to deliver so Josiah could be immediately cared for in the cardiovascular intensive care unit at Rady Children’s Hospital-San Diego.
Josiah had his first open-heart surgery when he was 4 days old, and doctors stated he would need another before he turned 1. “They didn’t want him to go home before his second surgery — he had that at 8 months,” Tonia recalls. With their newborn facing months in inpatient care and home thousands of miles away, Tonia moved into the Ronald McDonald House to stay near Josiah, while Jomel made the tough decision to return to Hawaii and work. “In the first year of a baby’s life, there’s a lot happening. It was hard, but the house is really good … [the other guests] became like my family,” says Tonia.
After recovering from his second procedure for two months, Josiah was able to return home to Hawaii. However, he continued to have difficulties — “he has a very complex heart,” his mom explains — and needed to see his care team at Rady Children’s every three months. “I think the longest we’ve ever stayed home is four months,” Tonia notes. In the face of Josiah’s struggles, a heart transplant was always at the back of his parents’ mind. “It was talked about very early on, but [his doctors] wanted to try other things to see if they could keep my son’s own heart. [We knew] that it would be a last resort but [that] it was something that could possibly happen.”
Between going home to Hawaii for the first time and turning 3, Josiah went through two additional open-heart surgeries. The last one was particularly taxing on him — he had multiple strokes, resulting in the need for a tracheotomy, a surgery that creates a hole through the neck and windpipe to support a breathing tube. It was then that doctors expressed their concern for his safety if the Sanarezes continued living in Hawaii. “There’s a children’s hospital on Oahu, but we’d still have [needed] to get Medivac-ed there, and then to San Diego,” says Tonia. As difficult as it was to leave behind family and the only home they’d ever known, his parents didn’t think twice. “We knew this was a good hospital and [his doctors] were the only ones who had ever worked on his heart. We trusted them.”
Once the family was settled into San Diego, conversations surrounding a transplant for Josiah ramped up. Although physicians wanted him to grow a bit more to be as strong as possible for his surgery, “his heart was becoming more stiff, and [they said] that they could possibly do another open heart [procedure], but he’d still need a transplant. Each surgery was harder and harder on his body,” explains Tonia.
In summer 2017, Josiah began to go through the rigorous pre-transplant process with the team at the Rady Children’s Heart Transplant Center within our Heart Institute, led by John J. Nigro, M.D. Before being placed on a transplant waiting list, each patient is carefully evaluated to ensure such an intense procedure will be as safe as possible based on their unique health situation, and will allow their quality of life to significantly improve. For example, in Josiah’s case, his mom says that physicians wanted to confirm Josiah would eventually be able to live his life free of his ventilator.
Josiah was deemed a suitable candidate and was officially listed for a transplant on April 5, 2018. On August 16, the Sanarezes got the news they had been hoping for. “That day, we had a clinic appointment and [had] seen the transplant team — that night, they called and said they had a heart for him,” remembers Tonia. “In the weeks leading up to that day, we had seen my son struggle more. [My husband and I] were at the point where we were taking turns at night watching his chest rise and fall to make sure he was breathing. [Hearing about the heart] was a blessing.”
Josiah was admitted to the Hospital at 10 p.m. that same night, and by 2:30 a.m., he was in the operating room for an 11-hour surgery with Dr. Nigro. Upon seeing their son, “the first thing we noticed was his color,” exclaims his mom. “Since he was born, he’s always been blue. Even now, we’re still getting used to his color. We’d never seen him pink!” After a three-week stay, which Tonia says is actually the shortest out of all his procedures, Josiah was released. “He was able to walk out, which is something we hadn’t seen in a while,” she remarks.
Dr. Nigro adds, “[Josiah] was in a wheelchair and on a home vent[ilator] before the transplant. He was incapable of moving about and having a normal childhood … now he is a very vibrant and fully mobile child with seemingly no limits to his activity and capabilities after transplant. This is extremely transformative as we have actually given him a childhood, which had previously been robbed by his underlying congenital heart disease.”
Back at home with his family, Tonia says Josiah is doing well and getting used to everyday life with his new heart. “He’s still adjusting because he gets scared after surgery, but when he’s around me and my husband, he’s good. Yesterday he was able to walk around for maybe a couple hours without stopping to take a breath, or [having] his lips turn blue, or huffing and puffing.” Josiah visits the Hospital for weekly appointments and receives physical and occupational therapy at home. While he is still in the recovery process — “we’re working right now on him getting off of the vent[ilator] more,” Tonia explains — Josiah’s future is bright. “Our hope is in the next year, he won’t need the vent, and he won’t need the trach[eostomy tube], and he’ll just be a normal kid running around,” she says.
There are even more exciting changes in the Sanarez household — a new hometown. “We’re extremely grateful for this hospital,” Tonia emotes. “Now that [Josiah] got a transplant, we decided we’re going to stay here. We trust the Hospital and the care.” Here’s to many happy and healthy years ahead in San Diego, Sanarezes!
Published October 2018