Macarena Brucculeri’s pregnancy took a turn for the worse late last year. She had been pregnant for 26 weeks when it was discovered that her baby had stopped growing. An emergency C-section was performed on Sept. 11, 2017, ushering in months of uncertainty and fear for Macarena and her husband, Joseph. Her son, Dominic, now 8 months old, has been hospitalized since birth.
Dominic’s life is confined to a hospital room where the staff keeps a close watch. Staying with Dominic has become a full-time job for Macarena. “Many times we were told he might not make it,” she said. “But he’s surprised many doctors. They’ll say, ‘Hold him tight — we’re not sure if he’ll make it tonight. He’s very, very ill.’ But he’s still here. He’s a fighter.”
Dominic’s journey began at NYU Winthrop Hospital in Mineola. There, the staff of the Neonatal Intensive Care Unit helped nurture him. But his face and body began swelling uncontrollably. For a time, he was unable to open his eyes, and he was placed on a ventilator.
Hospital staff decided to send Dominic to the Children’s Hospital of Philadelphia, where he has been since Jan. 22.
His swelling was identified as a lymphatic issue. Normally, the lymphatic system helps filter out toxins and waste, but be-cause Dominic was born prematurely, his system did not fully develop. To compensate for this, two drainage tubes were inserted on the sides of his abdomen, helping to release the unwanted fluid that caused his swelling. According to Macarena, Dominic is the first infant in the world to undergo this operation.
An infection began in his right drainage tube in March. He was put on antibiotics, which could cause complications since the medication filters through his kidneys, according to his mother. So far, Dominic’s kidneys are fine, but his oxygen, blood levels and heart rate need to be monitored, and he remains intubated to receive sustenance.
“Because of the infection, we almost lost him,” Macarena said. “It was a terrible, terrible time . . . But he fought through it and we’re still here.”
With help from the Ronald McDonald House, Macarena stays close by and spends morning to midnight with Dominic in Philadelphia. The charity has funded her stay at the Sheraton University City Hotel since her son’s move to Philadelphia, including meals.
Joseph, a lawyer for Con Edison, has remained in Merrick, and only spends time with his son on weekends. On Friday nights, he makes the three-hour drive to Philadelphia, and returns to Long Island for another work week on Sunday night.
“We don’t know what the next hour is going to bring,” Joseph said. “I wish nobody would ever go through this journey ever. It’s the worst feeling in the world. I wouldn’t wish this on my worst enemy.”
For the Brucculeris, since there is no definitive treatment or explanation why Dominic is suffering, their struggle seems endless — but they look to small things to keep them going.
Dominic loves music, and his mother sings to him — his favorite song is “You Are My Sunshine.” “He wiggles his arms and his little toes,” said Macarena. “He always tries to open his eyes when I sing that.”
Joseph recalled the first time he held his son: “I was terrified to hold him for the first time. He was so small, God forbid I hurt him or anything. But when I did, I got all teary eyed, [and] started crying.”
Dominic’s progress can be followed on the Facebook page Miracle Baby Dominic. Macarena’s friend Kesha Kennedy also set up a GoFundMe, which can also be found on the page.
“He’s shown me his will to live . . .,” Macarena said “Last night I was leaving the hospital, and I went to give him a kiss and say goodnight and he actually opened his eyes, which he hasn’t been able to do in weeks.”