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Love, labor, and loss

Yvonne Abraham

THIS STORY APPEARED IN

February 19, 2012|By Yvonne Abraham

Albina Root (left) and Dhafir Johnson, with their daughter, Ileana Renay. (Albina Root )

NEEDHAM - Dhafir Johnson and Albina Root knew they were meant to be.

Soon after they met 18 months ago, they began planning a lifetime. They counted on the usual things - a home, children, growing old together. But they didn’t consider marriage. “What we had was more than marriage,’’ Albina said. “We knew that piece of paper couldn’t make us any happier.’’

Albina got pregnant easily last spring, despite doctors’ advice that the paralegal, 30, would have trouble conceiving. Her pregnancy went smoothly. Albina and Dhafir, a 31-year-old nurse who goes by DJ, agreed on a home birth. The baby was due Valentine’s Day. But on Jan. 9, Albina went into labor, and had an emergency caesarean section. Ileana Renay arrived at 8:36 p.m. - 4 pounds, 1 ounce, with a shock of black hair - and at first, she seemed fine.

But tests soon showed her kidneys weren’t functioning. Ileana was struggling mightily. A day later, doctors at Massachusetts General Hospital diagnosed her with a rare syndrome called neonatal hemochromatosis. For reasons nobody yet understands, the illness starts in utero, when the mother releases antibodies that attack the fetus’s liver. Few babies with the syndrome are born alive, and few of those who are, survive.

Ileana’s parents busied themselves, trying to keep helplessness and hopelessness at bay. Within days, they became experts on the disease, watching as their daughter received transfusions, noting her lab results in a diary. “We knew we were working against the odds,’’ Albina said. “But we saw how she was fighting. . . . I thought for sure our chances were better.’’

About a week after she was born, Ileana seemed to be rallying. She was more alert, could take a bottle, and managed without a breathing tube. For the first time, Albina held her. “It was the happiest moment,’’ she said, “just to be able to hold your baby.’’

But the joy soon ebbed. Doctors found bleeding in Ileana’s brain. She began having seizures. On Wednesday, Jan. 25, doctors talked to the parents about their dwindling options.

Suddenly, DJ and Albina felt there was something they had to do: They wanted to be married - right there, in the neonatal intensive care unit. “For me, Ileana was the best witness to our love,’’ Albina said, “the embodiment of all we felt for each other.’’