Amir’s Story
Amir was born at just over 24 weeks, marking the beginning of a long and challenging journey for both him and his family. Shortly after birth, he developed hydrocephalus, a condition where fluid builds up in the brain, leading to potentially severe complications.
“Watching Amir struggle to breathe and seeing his head grow larger due to the fluid buildup were some of the hardest moments of our hospital stay,” says his mom, Blanca. “There was a lot of uncertainty about his future. Each day seemed like throwing a coin up into the air without knowing the outcome.”
The treatment plan for Amir was daunting. He needed to reach a weight of just over 6 pounds before he could undergo surgery. Initially, doctors placed a small tube in his head to relieve pressure, but when that didn’t help, they implanted a thin plastic tube that runs from the brain’s cavities to the stomach. Thankfully, this procedure worked.
After a four-month stay at Rady Children’s Hospital, Amir was ready to go home. To help ease the transition, his family turned to the Little Heroes League, which became a crucial support system, providing help with paperwork, setting up follow-up appointments and offering companionship during those visits. The team ensured that the medical staff and Amir’s family were aligned regarding his condition and care plan.
Little Heroes League is a support program designed to assist families of premature infants throughout the U.S. By offering emotional support and practical assistance both in the hospital and at home, nurses and social workers from Little Heroes League play a vital role in easing burdens on families, helping them navigate the complexities of caring for their fragile newborns with confidence and hope.
‘They weren’t just there with medical support; they cared about everything. From explaining things clearly before his stay to making sure we had everything we needed at home, they were there every step of the way.”
“Having Amir in the hospital was scary, but the Little Heroes League team felt like a beacon of light in the storm,” Blanca recalls. “They weren’t just there with medical support; they cared about everything. From explaining things clearly before his stay to making sure we had everything we needed at home, they were there every step of the way. They listened, they truly cared, and that made all the difference. Amir’s recovery wouldn’t have been the same without them. I can’t recommend the Little Heroes League enough to any family facing a similar journey.”
Today, Amir is 11 months old (7 months adjusted age) and is doing well. He is making progress, and his family is hopeful. The journey has been tough, but with the support of the Little Heroes League and Rady Children’s, Amir and his family have navigated these challenges with resilience and hope for a bright future.
It has been incredible to watch Amir grow and develop since discharge from the NICU. He is continuously advancing his motor skills and reaching new milestones,” says Valerie O’Loughlin, RN, Outpatient Nurse Navigator, Little Heroes League. “Time and time again, he has conquered challenges thrown his way, demonstrating his strength and persistence, like a true superhero. The first year post discharge from the NICU is not easy, but Amir’s family continues to overcome obstacles with great strength and tenacity.”
To learn more about our Neonatology/NICU program, click here.