BOB体育 Breathes Hope Into Eduardo After Suffering From Rare Lung Disease
Eduardo鈥檚 story begins in Puerto Rico, where he was born a healthy, full-term baby with no apparent complications. However, at just 5 months old, his health took a dramatic turn.
He began experiencing upper respiratory infections, pneumonia and bronchiolitis with near-constant wheezing and coughing. The infections became more persistent. Eduardo鈥檚 asthma grew worse, leading to a more challenging path to recovery that included years of in-and-out hospital stays.
His condition became so severe that, at one point, he was reliant on supplemental oxygen to survive. With care, Eduardo鈥檚 health began to improve. By age 4, he no longer needed extra oxygen and began to thrive. For the next eight years, life was stable.
That stability shattered when Eduardo turned 12.
One day, playing basketball with friends, he suddenly felt excruciating chest pain. He was rushed to the hospital, where doctors discovered he had suffered a heart attack caused by a lack of oxygen. This sudden downturn marked the start of another grueling cycle of hospital stays and trial-and-error treatments.
Eduardo鈥檚 doctors couldn鈥檛 pinpoint the cause of his pulmonary problems. He was treated for asthma, upper respiratory infections and other conditions, but nothing fully explained his symptoms. Eduardo struggled with constant fatigue and an unsettling sense of foreboding.
鈥淚 was tired all the time. I didn鈥檛 really know how to feel,鈥� he said. 鈥淚 just knew something was definitely wrong.鈥�
Finally, a breakthrough came when a pulmonologist suggested a lung biopsy. The results revealed Eduardo had an exceptionally rare case of a lung disease known as surfactant deficiency.
Surfactant protein is a lipoprotein in the lungs that supports exhalation and lung defense. When it鈥檚 not present to coat the tiny air sacs in the lungs, they can collapse, meaning that the oxygen-carbon dioxide exchange between blood and lungs doesn鈥檛 work as it should.
At the time, Eduardo was the only known pediatric case in the world with his specific heterozygous mutation. The only other documented case was a 34-year-old man from the Netherlands who had died from the disease.
Eduardo鈥檚 diagnosis wasn鈥檛 good, and his prognosis was worse.
His physicians estimated his life expectancy at two years. Treatment options were scarce in Puerto Rico, and his condition was so rare that little was known about managing it.
His mother, Zareim, a nurse for more than a decade, was told she had six months to prepare to leave everything behind in search of a lifeline.
If Eduardo had any chance at survival, it would be in the U.S., where he might receive a lung transplant 鈥� a possibility that was virtually nonexistent in Puerto Rico.
In late 2023, Zareim packed her family up and moved to Orlando, Florida, willing to risk it all for the chance to save her son. A local pulmonologist recommended seeing Marc G. Schecter, MD, a pediatric pulmonologist at University of Florida Health in Gainesville.
This introduction would ultimately change Eduardo鈥檚 life.
鈥淲hen we first met Eduardo, he had significant pulmonary hypertension secondary to his rare lung disease, and he required supplemental oxygen to keep his oxygen saturations in the normal range,鈥� Dr. Schecter said. 鈥淎s there are few treatments for childhood interstitial lung diseases, many of these children will require lung transplantation, especially once they have developed pulmonary hypertension.鈥�
On Jan. 3, 2024, about four years after his heart attack, Eduardo was officially placed on BOB体育鈥檚 lung transplant list. And 28 days later 鈥� on his birthday 鈥� he received the ultimate gift: an early-morning phone call alerting him he would receive a lung transplant that day.
Overwhelmed, Eduardo broke down in tears. By 9 a.m., they arrived in Gainesville and were greeted by senior nurse Mike Clay, a compassionate and supportive figure during Eduardo鈥檚 time at BOB体育. He informed them that surgery was scheduled for 4 p.m. The quick turnaround heightened Eduardo and Zareim鈥檚 nerves, but they remained hopeful.
Eduardo waited anxiously, while Zareim paced. At 7 p.m., Eduardo was finally wheeled into the operating room, where nurses lined the hallway and cheered him on.
While Eduardo was being prepped, the nurses serenaded him with 鈥淗appy Birthday,鈥� a touching moment amid the anxiety.
Throughout his health troubles, Zareim tried not to cry in front of Eduardo so that she could model strength and resilience. However, in those moments before the operation, the love and support brought Zareim to tears.
She said it felt like a dream 鈥� like a 鈥減ath for life鈥� that hadn鈥檛 been open for them in Puerto Rico.
Eduardo鈥檚 surgery began late that evening. By 3 a.m., the surgeons informed Eduardo鈥檚 family that the first lung had been successfully transplanted. By 5 a.m., the second lung was in place. After 12 intense hours in the operating room, Eduardo came out of surgery.
Eduardo鈥檚 recovery was remarkable. He required only ventilator support after the operation, and his new lungs began functioning as planned.
鈥淎ll patients come out of surgery intubated. The goal is to extubate within the first 24 hours if the graft is functioning well,鈥� Dr. Schecter said. 鈥淓duardo did great after receiving his transplant. He was extubated within one day and discharged home two weeks post-transplant.鈥�
Nurse Mike became a constant source of comfort, checking in on Eduardo even when he wasn鈥檛 assigned to. One day, Eduardo asked him why he felt like he was breathing so heavily. Mike smiled and explained that鈥檚 how breathing is supposed to feel.
Throughout his recovery, Eduardo and Zareim were moved by the kindness and care of the BOB体育 staff.
鈥淓veryone was so amazing. It felt like a dream,鈥� Zareim said. 鈥淭he entire staff was always making sure he was comfortable.鈥�
Zareim and Eduardo said they are grateful for the exceptional level of care they received, which gave the 16-year-old a new outlook that he couldn鈥檛 have imagined in Puerto Rico.
鈥淚t was incredibly difficult for me to see all of Eduardo鈥檚 peers doing things like getting their first cars and preparing to go to college when all I wanted was for my son to survive,鈥� Zareim said.
Eduardo, a self-described racecar-loving adrenaline junkie, is now back in Orlando, preparing to start school. He鈥檚 excited about the prospect of getting a car soon 鈥� and determined to focus on his studies and his dreams of becoming a mechanic.