Mina Longo is a soft-spoken 13-year-old who loves to read horror novels, listen to heavy metal music, and wants to learn to play the guitar. She sounds like many girls in middle school, worrying about things like making time for friends and if she might finally get a new Google Pixel. You would never know it wasn’t always this way.
Mina’s complicated health journey began even before birth when physicians noticed her left kidney wasn’t developing as expected. Then, to the surprise of her family and her doctors, Mina was born nearly 10 weeks premature at a mere 2 pounds 12 ounces. She was so small that she fit in her mother’s hand. Soon after birth, Mina couldn’t breathe or eat on her own and was immediately transferred from another local hospital to Rady Children’s Hospital-San Diego. At two days old, surgeons repaired a hole between her trachea and her esophagus, and then connected her esophagus to her stomach.
Symptoms Defying Explanation
Over the next 10 years, her life was filled with doctor’s appointments, surgeries, hospital stays and hundreds of opinions and diagnoses from various health experts. Still, many of her health conditions remained a mystery, and her symptoms have defied an explanation. Mina’s mom, Shannon, remembers the wild ride.
“Her internal plumbing was all over the place,” says Shannon. “It was a complete game changer when she was born because all of my original plans were out the window. It was like, all right, let’s see what we must do for this little person. It was a mystery to figure out what was happening with her.”
First Patient in Pediatric Aerodigestive and Airway Surgery Program
Since Mina had difficulty with respiratory and swallowing functions, physicians at Rady Children’s recommended Mina be the first patient at the pediatric Aerodigestive and Airway Surgery Program when she was 5 years old. With a multidisciplinary team of experts from otolaryngology (ENT), pulmonary and respiratory medicine, gastroenterology, hepatology and nutrition, speech-language pathology and occupational therapy, the program specializes in the evaluation, treatment and management of complex airway and esophageal disorders. The collaborative team has the extensive experience necessary to care for kids with both common and rare disorders involving the respiratory and digestive system.
“We quickly realized that some of our patients with complex conditions that span multiple specialties were receiving fragmented and uncoordinated care,” Matthew Brigger, MD, chief of the Division of Otolaryngology at Rady Children’s, says. “These patients really needed active focus and discussion by a dedicated group of multidisciplinary specialists. We created the Aerodigestive Clinic to address this unmet need.”
The program is set up with the patient and family in mind by offering convenient weekly consultations at a single location on the same day. Not only did this offer the family convenience, but it also allowed for collaborative care from across Rady Children’s. With complicated health conditions to navigate, the family can lean on the team at Rady Children’s to connect the dots among many different areas of medicine. The program was perfect for Mina, who didn’t have a straightforward diagnosis or treatment plan.
“The ability to come together as a team to solve some of the most difficult problems and see the change in these children who often have spent their lives hearing the word “no” is truly a privilege,” Dr. Brigger adds.
They Listen When No One Else Will
Mina’s family found the level of care at Rady Children’s hard to find elsewhere. Residents of Los Angeles, the family regularly drives the two hours to San Diego to receive care here.
“I could see the difference in the way that people at Rady Children’s listened,” says dad Ricardo. “There’s a difference in how people are treated and how kids are treated here. It’s a special hospital. Hospitals in Los Angeles don’t even compare. The level of care is not the same as it is here. The difference here is that they treat you like family and they listen.”
Shannon agrees that she was often overlooked when offering her thoughts regarding Mina’s care at other institutions.
“When she was young and she needed emergency care, we would take her to the hospital in Los Angeles, and they would diagnose something and I would say, no, that’s not right. Place after place, they would do whatever they thought was right but without considering my input,” says Shannon. “We would come back down to Rady Children’s Hospital because the moment you tell the surgeon your thoughts, they would take that information to heart. They listen when no one else will. It has been a great experience, and that’s why we are here and keep coming back.”
When asked what’s next for Mina and her family, Mina says the sky is the limit. She is passionate about advocating and fundraising for other children with complicated diseases through the Rady Children’s Hospital Foundation. In 2022, Mina served as the local Children’s Miracle Network Hospitals champion, helping to raise funds through partnerships with Costco Wholesale, Panda Express, Walmart, Sam’s Club, Rite Aid, Marriott International, Credit Unions for Kids, Ace Hardware and more. Mina met and encouraged these supporters as they raised funds for Rady Children’s through in-store promotions, employee contests, customer contributions and fundraisers.
So far, Mina has raised more than $10,000 to help other kids like her.
“I advocate for the kids who don’t have a straight answer,” Mina said. “I don’t know what’s next but it’s going to be good, and I think Rady’s is really great.”
Shannon didn’t know what was in store for the future, but the family aims to make each moment count.
“If only the world could learn strength, patience and love from her and kids like her,” says Shannon. “The hope is that endless possibilities are her future, but the reality is that so much is unknown. It’s a daily reminder that this is the best for now, and that’s good enough for me.”
Dr. Brigger agrees that Mina is very special and that her energy inspires his team.
“Mina’s complexity is overshadowed by her amazing spirit. For a child with such a complex health history, you would never know it by her amazing outlook on life. Her passion and zest for life, along with other incredible patients like her, is what drives us to continually build the program and make it better.”
To help raise money for kids like Mina, visit rchsd.childrensmiraclenetworkhospitals.org.