Maria Lourdes and her husband Mario Santiago want to inspire parents everywhere to follow their gut instinct when it comes to their child. Although her fourth pregnancy got off to a rocky start, Jarel was developing and healthy. However, Maria Lourdes had to undergo an emergency cesarean at only 33 weeks due to pregnancy complications.
Jarel was born healthy, according to the doctors, but in the days following his birth, Maria Lourdes and her husband began having concerns about Jarel’s breathing. “His respiration was rapid and he seemed to have trouble breathing.”
Maria Lourdes knew something was wrong, and decided to take him to the nearest emergency room, but doctors could not find anything wrong with Jarel. During the next two months, Maria Lourdes visited several specialists, emergency rooms and hospitals along the west coast of Florida searching for answers for little Jarel.
“They told me he had reflux and heartburn. However, I was still not convinced. Something seemed off,” she said. “Then there was one night where his breathing was very shallow and we felt he was turning blue.”
The Santiago family traveled to a children’s hospital one and a half hours away that night to find help for Jarel. He went into cardiac arrest. The next few hours were filled with despair and frustration until test results finally revealed an answer. Jarel was suffering from a complicated heart problem.
Jarel was transferred to Nicklaus Children’s Hospital’s Cardiac Intensive Care Unit, one of the few in the state equipped to treat complex heart conditions in infants and children.
Dr. Redmond Burke, Chief of Cardiovascular Surgery at Nicklaus Children’s, says Jarel was very sick when he arrived. “Jarel had a pulmonary artery sling, a rare condition in which the pulmonary artery wraps around the airway as its name suggests. In addition, Jarel also had an extremely narrow airway: known as tracheal stenosis, caused by complete tracheal rings, a complex and lethal condition in infants with a vascular anomaly like this one.”
Dr. Brian Ho, a Pediatric Otolaryngologist who trained at the world renowned Cincinnati Children’s airway center, specializes in complex airway reconstruction surgery. Dr. Ho joined Dr. Redmond Burke in a five-hour operation, on cardiopulmonary bypass, that consisted of translocation of Jarel's pulmonary artery and a complete reconstruction of his trachea. Nicklaus Children’s is one of few children’s hospitals in the nation who offers a team approach for this type of complex airway issue.
“Our goal is to ensure the patient has the best quality of life, free of breathing support. Jarel was completely off of breathing tubes and oxygen after only days after the surgery and his heart condition was also fixed,” said Dr. Ho.
Maria Lourdes is grateful to have Jarel back in her arms and hopes his story will inspire other families to follow their instinct. “He was a different baby after surgery. We are so grateful to Nicklaus Children’s Hospital and the entire team of doctors and caregivers who have cared for Jarel. The journey was not easy, but we never gave up.
Jarel just celebrated his half birthday with a small celebration at Nicklaus Children’s. Dr. Burke and Dr. Ho joined in the festivities. “It was the perfect way to close the chapter in this journey,” said Maria Lourdes.
