In the heart of Garden City, Long Island, a family’s journey unfolds, filled with hope and resilience, as they navigate the challenges presented by a rare lymphatic malformation affecting their young son.
At just 13 weeks into her pregnancy, Christiana DiMartino received news that would alter the course of their lives.
Doctors revealed that their unborn baby had a large cyst, equivalent in size to his head, giving the pregnancy only a 9% chance of making it to full term. Undeterred, the courageous parents, Franco and Christiana DiMartino, decided to proceed with the pregnancy, defying the daunting odds.
Matteo DiMartino entered the world with an abnormally large mass spanning across his chest and left arm, constituting up to 50% of his body weight and surpassing 3 pounds. The months leading up to his birth were marked by sleepless nights for his parents, grappling with the uncertainties surrounding Matteo’s condition.
The identified mass belonged to a specific type of lymphatic malformation, a rare non-malignant condition characterized by micro and macro cysts filled with fluid. This anomaly began developing when Matteo was still in the womb.
The malformation resulted in Matteo’s left arm permanently positioned at a 90-degree angle, limiting neck and head movement, hindering him from rolling over, sitting up, fitting into a car seat, or wearing conventional clothing. Additionally, he faced recurrent skin infections.
Undeterred by the challenges, Matteo underwent a successful seven-hour surgery at six months old. The procedure aimed to debulk and reconstruct the affected area using surrounding tissue, also addressing the chronic draining wound.
Dr. Milton Waner from Lenox Hill Hospital, one of the specialists involved, expressed optimism about Matteo’s future, highlighting the significant improvements made during the surgery.
Post-surgery genetic testing revealed a rare mutation of the overgrowth gene PIK3CA, associated with many cancers. While Matteo’s malformation remains significantly smaller, and the draining portion has been completely excised, lessening the risk of infection, the road ahead includes regular monitoring.
The DiMartinos are now eager to share their extraordinary story, aiming to raise awareness about lymphatic malformations. They hope their journey will inspire other families facing similar situations and serve as a testament to the importance of advocating for one’s child.
Matteo’s parents, Franco and Christiana, express overwhelming gratitude for the transformative impact of the surgery on their son’s life, turning fear into love and appreciation for the precious moments they share with their miracle baby.
