One-month-old Liliana Ann Greene bears the scars of surgery required to repair a heart defect. The baby is held by her parents Dias Greene and Mackenzie Roy at their Waterville home Thursday. Rich Abrahamson/Morning Sentinel
Liliana Ann Greene is her parents’ special Valentine.
She was born Jan. 11 with a full head of hair and dark eyes, weighing in at 6 pounds and 6 ounces.
But the joy her mother, Mackenzie Roy, and father, Dias Greene, should have felt was overshadowed by a deep fear that Liliana would not survive the day.
In December, a month before she was born, an ultrasound showed a white speck on Liliana’s heart. The Waterville couple’s doctor referred her to a Portland heart specialist and from there they went to Boston. Liliana was diagnosed with truncus arteriosus, described by the Mayo Clinic as a life-threatening condition where a large blood vessel fails to divide into two arteries during fetal development.
The day after Liliana was born at Brigham and Women’s Hospital in Boston, she underwent surgery next door at Boston Children’s Hospital to repair her heart.
“They had to fix a wall in her heart and put a conduit tube for her lungs because the arterial vein giving blood to her lower body was blocked off,” Greene said Wednesday. “It was an all-day surgery for her.”
As new parents, Greene and Roy, both 19, were frightened.
One-month-old Liliana Ann Greene is held by her parents, Dias Greene and Mackenzie Roy, both 19, at their Waterville home Thursday. Rich Abrahamson/Morning Sentinel
“When she went into surgery, they said there’s a pretty good chance that she might not make it,” Greene recalled. “I thought, is she going to make it through?”
Their prayers were answered when the doctors announced it had been successful, though she has an immune deficiency, can get sick easily and must be carefully held and handled. After 3 1/2 weeks in the hospital, she arrived home last week and her parents are grateful.
“It means the world to me, it makes me happy that she made it through and and we actually have her home,” Greene said.
A neurodevelopment nurse will visit soon to help with Liliana, who must go to Boston annually to be checked, as the conduit in her heart will not grow with her and must be replaced if it is not adequate, year-to-year, according to Greene.
The engaged couple lives with his mother, Annastasia Greene, and her two other children, 13 and 8, whom she home-schools.
“They both are really good parents,” Annastasia Greene said. “They were so strong, the both of them. They did a phenomenal job. I give them all the admiration for what they’ve been through and I’m really proud of them.”
A deeply religious family, the Greenes attends Living Water Community Church in Oakland, which has been supportive, she said.
But the young couple has some unmet needs. The family doesn’t have a vehicle, so taking Liliana to medical appointments is difficult as it costs about $20 for a cab to get there and back from their mobile home on Patriots Drive off West River Road. They have a lot of appointments, according to Annastasia Greene.
“It’s more her immune system isn’t the best and the doctors don’t want her risking getting a cold,” she said. “Because she is so sick, going in regular transport is not advisable because of her condition.”
MaineCare has helped with medical coverage and the elder Greene is assisting as much as possible and is starting an online business buying and selling collectibles. She also volunteers at the church’s clothing bank.
One-month-old Liliana Ann Greene is held by her parents, Dias Greene and Mackenzie Roy, at their Waterville home Thursday. Liliana was born with a heart defect that required day-long surgery at a Boston hospital. Rich Abrahamson/Morning Sentinel
Dias Greene’s job as a painter ended recently and he will look for a new one. They need diapers and other baby-related items, and must save money to get to Boston each year of the baby’s life. They were fortunate the hospital provided them with an apartment to stay in while Liliana was in the hospital, but they had to pay for other needs, including food and transportation.
Sometimes people in risky situations just need a hand up. Anyone wanting to help may email Annastasia Greene at annastasia.greene@gmail.com
Liliana, she said, is a precious gift to the family.
“Her heart is fragile but she is strong and so are her parents,” she said.
Amy Calder has been a Morning Sentinel reporter 34 years. Her columns appear here weekly. She may be reached at acalder@centralmaine.com. For previous Reporting Aside columns, go to centralmaine.com.
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