To casual observers, 9-month-old Matteo DiMartino looks like a normal, happy baby meeting all his milestones and being showered with love from his parents. However, just last year his parents were unsure if their son would live past birth, let alone to almost a year.
Newsday reports that at a routine ultrasound in 2018 at 13 weeks pregnant, Christina and Franco DiMartino were told their son had a less than 10 percent chance of living to birth. The ultrasound had revealed a cystic hygroma, a large mass, in Matteo’s case across his chest severely restricting his movement and growth. Although the cyst was not cancerous, the size and location threatened Matteo’s life.
Additionally, these types of lymphatic malformation have a strong correlation with a number of genetic abnormalities. About 75 percent of babies with the type of cystic disorder Matteo suffered also have a chromosomal disorder. In the culture of deadly discrimination sadly common in prenatal care, many parents with babies with a genetic condition, such as Trisomy 13 or 18, are pressured to end their child’s life in abortion.
Matteo’s mother refused to give up on her son. A teacher by day, DiMartino spent her evenings researching Matteo’s condition and finding doctors who may be able to one day help her son. For the next six months, DiMartino scoured the internet for stories and medical journal articles, learning the vocabulary and surgeries related to Matteo’s diagnosis.
Even with her persistence and steadfast commitment to helping her son, DiMartino says the wait was not easy. She explained that for the last six months of pregnancy, “Every day that went by, we’d wonder if today was the day. It was definitely stressful and became almost crippling during my pregnancy.”
Nonetheless, DiMartino’s persistence contributed to assembling a team that would make possible the life-saving treatment Matteo needed. “The DiMartino family exemplifies the example of determination, heart and never giving up,” Dr. Martin Chavez told Newsday, chief of maternal fetal medicine at NYU Winthrop-University Hospital, who treated DiMartino early in her pregnancy.
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Matteo was born on April 17, 2019, at 35 weeks via caesarean section. At birth, the mass on his chest and left arm weighed more than three pounds and prohibited movement of his arm, head, and neck. The mass caused an open wound that left Matteo susceptible to deadly infection and kept his left arm permanently extended at a 90-degree angle. With all these complications, Matteo would not be able to roll, sit up, ride in a car seat or even wear most baby clothes. Of course, for his parents, their biggest concern was whether he would live.
“At a certain point I was scared to love Matteo,” Christina DiMartino told Newsday. “I was scared not knowing what was going to happen when we left the hospital, not knowing if he was going to make it.”
Over the next six months, DiMartino worked to find the team of expert surgeons who could perform the life-saving surgery her son needed. Five specialists gathered at Cohen’s Children’s Medical Center in New Hyde Park in October 2019 to remove as much of the cyst as possible and reconstruct Matteo’s chest and arm. The seven-hour surgery was deemed a success, and no one would ever guess the difficulty and trauma Matteo went through from looking at him today.
“It’s a miracle,” said Christina DiMartino said at a recent press conference about the surgery. “I truly believe he’s my miracle baby.” DiMartino told another news outlet, “Each and every doctor has a role in saving my son’s life and I am forever grateful for that.”
Dr. Milton Waner, one of the surgeons who treated Matteo, said the condition is unlikely to recur and Matteo appears normal and healthy. “This will not hold him back,” said Waner, adding “It will not limit him.”
Matteo’s dad described the experience of living in constant fear for his son’s health to having a happy baby growing right on track. He said, “I went from being scared to [having]that beautiful baby boy who keeps us up every night. And I wouldn’t change it for the world.”
Like the DiMartino family, many parents face challenging diagnoses before their children are even born. Sadly, many parents are pressured to end their child’s life instead of continuing with the unknown. Instead of giving families options, including innovative treatment like prenatal surgery, many parents are led to believe that their situation is hopeless, and even that their children are “incompatible with life.” Sharing stories of hope like Matteo’s is a powerful way of giving parents hope.