Note: Celeste, a family friend of Mario and Maria, translated this interview for the Herald-Tribune.
ARCADIA – Baby Jarel turned 1 year and 1 month old this week.
He sat on his mother’s knee, chewing on the pacifier that she clipped to his shirt. He wiggled and bounced while his mother held onto him.
Jarel being at home and in good health is not something his parents could have expected a year ago. The only telltale sign of his past health complications now is a long, thin white scar in the center of his chest.
But when he was only a few months old, doctors told Mario and Maria their baby may not survive at all.
Since birth, Jarel has faced health complications. After Maria’s high-risk pregnancy, Jarel was born prematurely at nearly 33 weeks. He spent a week in the neonatal intensive care unit before his parents could take him home.
Soon after returning home, Mario and Maria realized their son’s breathing was not quite right. Jarel’s breathing difficulties had been apparent in the hospital, but doctors had thought it a normal side effect of his premature birth.
He was home for one month before Mario and Maria’s concerns about his heavy, shallow breathing grew. They took him to a hospital in Sarasota before Jarel was transported to Johns Hopkins All Children’s Hospital in St. Petersburg.
By the time he arrived in St. Petersburg, Jarel’s health had plummeted. Then 6 weeks old, Jarel could not keep his milk down. He struggled to breathe or eat, his father said. He stayed at the hospital in St. Petersburg for 10 days before his parents could take him back home. Then, weeks later, Mario and Maria noticed him struggling to breathe again.
At 3 a.m. on Jan. 27, the same shallow, rapid breathing returned. By Jan. 28, he was admitted to the pediatric care unit at Golisano Children’s Hospital of Southwest Florida in Fort Myers.
After arriving at the children’s hospital in Fort Myers, little Jarel soon had oxygen tubes hooked up to his body. This is when he had his first heart attack, Maria said.
Doctors decided it was time he was sent to specialist doctors in Miami. By Jan. 29, Jarel arrived at Nicklaus Children’s Hospital in Miami.
By the time he was 2 months old, Jarel had suffered three heart attacks, his mother said. After the first, he went without oxygen to his brain for 16 minutes. Doctors said he might not heal or regain his movements.
An ultrasound revealed Jarel had heart complications. Jarel’s pulmonary artery was not in the right place, Mario said, and his windpipe was thin and narrow. His breathing troubles were caused by the artery applying pressure to his trachea.
For the next two months, Mario said his son was hooked up to dozens of machines and oxygen tubes. After a few months on medication and antibiotics, along with the oxygen tubes and machines, Mario and Maria said they noticed some improvements in their baby’s health.
Finally, on the morning of May 6, Jarel went into surgery. Maria explained that doctors at the Miami hospital reconstructed his trachea and moved his pulmonary artery.
Maria recalled the day of Jarel’s 11-hour surgery. She said she remembered other parents crying and afraid. But she said her faith, both in the doctors and in her religion, persisted.
Over the months of waiting for surgery, Maria stayed in the various hospitals with Jarel, never leaving him, she said. Mario and the other children traveled back and forth from Arcadia to St. Petersburg, Fort Myers and Miami to visit. The traveling became costly and difficult to manage on his income from his work laying sod.
For months, Mario drove to visit his wife and baby. As Maria said, Mario became the mom and dad for the other children. He cooked and cleaned for them, did the girls’ hair and got the other children ready for school each day.
Sister Ann De Nicolo, the director of prevention support services in Arcadia for the Diocese of Venice’s Catholic Charities program, first met the family around January or February when they needed assistance with rent and a utility bill. While worrying about the baby’s health, the coronavirus pandemic also affected the family. Mario’s work hours were reduced as a result of the pandemic, De Nicolo said.
Missing work due to traveling and being in various hospitals coupled with Mario’s reduced work hours caused the family to fall behind on bills, De Nicolo said.
Through Season of Sharing, De Nicolo said she helped the family with rent in January and February and one month of an electric bill, totaling about $986.
De Nicolo visited the family at their home in Arcadia on Monday to bring the children toys for Christmas. For the parents, she brought gift cards and a Christmas dinner voucher from Publix.
“They’re survivors. They really are,” De Nicolo said. “The whole family really speaks of a Christmas family. Here they are, an immigrant couple in a strange land with a child, and the child is sick at Christmas. He is a miracle baby.”
By July, Jarel came home. Doctors said he was the first baby they had seen with the complications he had. Maria said “miracle baby” is another nickname of Jarel’s now, along with his first nickname, “little bean,” which is what he looked like when she first saw him through an ultrasound while pregnant.
Reflecting on the last year, Maria said the doctors and family alike find his recovery a miracle.
How to help
The Season of Sharing fund was created in 2000 as a partnership between the Herald-Tribune and the Community Foundation of Sarasota County. The goal is to get emergency funds to individuals and families on the brink of homelessness in Sarasota, Manatee, Charlotte and DeSoto counties. Every dollar donated goes to people in need. There are no administrative fees and no red tape. Funds may be used for rental assistance, utility bills, child care and other expenses needed to help families get back on their feet.
Donations to the Season of Sharing fund may be made online at cfsarasota.org/season-of-sharing, or by sending a check (payable to the Community Foundation of Sarasota County) to Attn. Season of Sharing, 2635 Fruitville Road, Sarasota, FL 34237. Contact the foundation at 941-955-3000 for more information or to request a credit card form. All donations are tax-deductible.
Angie DiMichele covers the Community Foundation of Sarasota County’s Season of Sharing campaign by highlighting the stories of people in the community who are being helped to avoid homelessness. DiMichele also covers nonprofits in the region and how they are responding to the impact of the coronavirus. She can be reached at [email protected]