GARDEN CITY, Long Island (WABC) -- The family of a young boy from Long Island have hopes he can lead a normal life after surgery for a rare lymphatic malformation.
Parents Franco and Christina DiMartino were told at 13 weeks pregnant that their baby had a large cyst the size of his head and had only a 9% chance of the pregnancy making it to birth, but they decided to continue with the pregnancy.
"It's a miracle," Christina DiMartino said. "I truly believe he's my miracle baby."
Still, Matteo DiMartino was born with an abnormally large mass located across his chest and left arm, encompassing up to 50% of his body and weighing more than 3 pounds. And the months leading up to his birth were sleepless ones.
"My husband would wake up in the middle of the night and see my phone illuminating my face and have to take my phone away or yell at me just go to sleep," Christina DiMartino said. "But there was, there was no sleep for, I would say seven months, since I found out about his diagnosis until he was born."
The mass was a specific type of Lymphatic Malformation, which are rare, non-malignant micro and macro cysts consisting of a buildup of fluid, which began when he was in the womb.
The malformation caused his left arm to hang at a permanent 90-degree angle and restricted neck and head movement, preventing him from rolling over, sitting up, fitting into a car seat and fitting into clothes. He was also subjected to reoccurring skin infections.
DiMartino underwent a successful seven-hour surgery at 6 months old to debulk and reconstruct the area with surrounding tissue and excise the chronic draining wound.
"We were able to re-section the tumor, the bits and pieces left behind, but these are nothing compared to what was there," said Dr. Milton Waner, from Lenox Hill Hospital. "And the future is very bright, rosy going forward."
Genetic testing post-surgery determined he has a rare mutation of overgrowth gene, PIK3CA, associated with many cancers.
The mass is now significantly smaller and the draining portion of his malformation completely excised, lessening chance of infection and allowing for full bodily function and mobility.
Even the scars on his tiny chest will mostly fade with time, and his parents are hoping their extraordinary story will inspire others.
"It like, breaks me up because that's my son, my first and only child," Franco DiMartino said. "And I went from being scared from that to that beautiful boy that keeps us up every night, we wouldn't change it for the world."
The DiMartino say their son is now meeting all physical milestones, and they held a press conference Monday with the customized team of doctors who performed the surgery.
"I still worry regularly for his future, so I still have that in the back of my mind, constantly," Christina DiMartino said. "But I mean we, me and my husband, we stare at him and we cry. And we just can't believe that, after the surgery, we almost forget how it began."
They are now hoping to bring awareness to Lymphatic Malformations with the hope of reaching more families in similar situations, sharing their experience of how to best advocate for your child.
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Long Island boy born with rare malformation has life-changing surgery