CLAYTON — As Christians gather to observe Easter and the resurrection of Christ, the Blackmon family of Clayton has another rebirth to celebrate: their baby daughter Sofie’s second chance at life.
During Sunday morning services, parents Melissa and Brent Blackmon will speak at the Church at Clayton Crossings, giving thanks for the congregation’s many prayers and gestures of support through Sofie’s ordeal. They also will tell their own story of faith and how it grew – even as hope seemed dim for the life of their youngest child.
Born with a defective liver, Sofie was within days, possibly hours, of death when news of a compatible donor came through. When that organ failed, too, just four days after the difficult transplant, her family was nearly overcome by despair.
“It was so scary,” recalls Melissa Blackmon, 37. “We were in such a dark, dark place.”
During months of treatment, long hours at their daughter’s hospital bedside and a series of disappointing turns in Sofie’s condition, the Blackmons clung tenuously to their Christian beliefs.
“It became a faith battle for us,” Melissa says.
She often got support from her friend Carrie Nixon, her unofficial “faith partner,” through text messages.
“Once, I told her I felt so guilty because I was yelling at God,” recalls Blackmon, whose prayers often concluded with angry questions about her daughter’s punishing illness.
As usual, Nixon offered what seemed the perfect response: “At least you are still talking to God; never stop talking to him.”
At 18 days, surgery
The Blackmon family’s battle began shortly after Sofie’s birth on March 30, 2012, at Rex Hospital in Raleigh. The 7-pound, 7-ounce infant was welcomed by her parents and two older brothers, Max, 6, and Jack, 4.
Pediatrician Hazel Garrish, who visited Sofie that day, noted a touch of jaundice – a condition not unusual in newborns, whose tiny livers can be slow to break down red blood cells. But lab results also hinted that something more serious might be going on.
Three days later, during a follow-up office visit, tests showed Sofie was experiencing high levels of bilirubin, the substance secreted by the liver as it breaks down red blood cells. That finding launched the family into a haze of hospital visits: WakeMed for an ultrasound, UNC Hospital for an MRI.
Eventually, they learned their tiny daughter had a life-threatening condition known as biliary atresia. She was missing the necessary bile ducts to flush waste from her liver.
Sofie was 18 days old when she went into the hospital at Chapel Hill for her first surgery, a procedure developed specifically for infants with biliary atresia. Doctors told the Blackmons that the procedure is successful in one-third of patients, offers a temporary fix for another third, and provides limited or no help for the remaining third.
Hope, then trouble
At first, the prognosis looked good for Sofie, her grandmother recalls.
“We thought the operation had been successful,” says Melissa’s mother, Cheryl Schreiber, who came to North Carolina from Maryland to stay with Jack and Max while Sofie had surgery.
In July, still concerned but optimistic, the family headed out for a vacation at Indian Beach.
Schreiber went along to help with the grandchildren, thinking she’d keep Sofie indoors while Melissa and Brent took the boys to play on the beach. Sofie had other ideas.
“Whenever we’d walk down to the water, her face would light up,” Schreiber recalls. “She’d smile the minute she saw the ocean.”
Melissa Blackmon calls the happy week at the beach “a gift from God.”
But after they returned home, a routine check-up showed that Sofie was descending into massive liver failure.
“Her case was very aggressive,” says Debra Sudan, chief of abdominal transplant surgery at Duke University Medical Center. Sofie was immediately hospitalized, and her name was placed on a national list of individuals needing liver transplants. The waiting began.
Entertaining a 5-month-old baby in a single small room was not an easy task, Sofie’s mother recalls, especially one who is tethered by feeding tubes, antibiotic drips and other medical equipment. Walks around the unit, songs and books and episodes of “Baby Einstein” helped fill the time.
Occasionally, Melissa and Brent would run home to visit Max, who had started kindergarten, and Jack, who had his fifth birthday party on Aug. 25 – the day Sofie received her first liver transplant.
“When Dr. Sudan came out of surgery with Sofie, she said everything looked wonderful,” Melissa recalls. “We were elated. Not only had she gotten the liver, but she made it through surgery.”
The couple barely heard the doctors’ warnings that complications were possible, “especially for babies, because their veins are so small,” Melissa Blackmon says.
Within hours, clotting in Sofie’s arteries began to block blood flow.
A 1 a.m. text
It was early the next morning, shortly after 1 a.m., when Nixon heard her cellphone buzzing on the nightstand. It was a text message from Melissa that Nixon had seen earlier in the evening. Nixon tried to ignore it at that hour. But lying awake, she changed her mind and sent her friend a text asking if she was OK.
“Melissa texted right back,” Nixon recalls. “She was on the way to the hospital because Sofie’s condition was critical. But said she had not texted me. I believe the Lord sent me that text to wake me.
“I blew her phone up sending her scripture that night. And some were verses I didn’t realize I even knew.”
Sofie was taken into emergency surgery in an unsuccessful attempt to unblock the clogged arteries. The desperate parents soon learned their baby had only a short time to live unless another liver could be located.
Melissa and Brent volunteered and were turned down as living donors. Then Melissa went to Facebook, posting an appeal to her friends and asking them to repost to their friends.
More than 30 people responded.
“People started calling nonstop. I heard from my hairdresser, a friend from high school, a friend with MS.”
The couple finally dropped to their knees in prayer.
“We knew the doctors couldn’t give us a liver, it was up to God,” Melissa says. “So we were in the PICU giving it all to God. That was the biggest faith challenge. We had to let go, to give it all to him.”
‘We had a liver’
In distress and exhausted, Melissa went to a hotel in Durham to try to sleep.
A few hours later, at 5 a.m., she got the call.
“We had a liver.”
She immediately phoned Brent at the hospital.
“We were just crying and cheering. The feeling came over us: This was it. We weren’t scared anymore.”
Two days after surgery, Sofie began to respond. The tubes providing her nutrition, fluids and antibiotics were removed. Within two weeks, she left intensive care.
“Overnight she just changed, she looked healthy. Her breathing tube came out. She was awake and smiling. It still amazes us how tough she was through everything.”
More than six months later, Melissa and Brent still reflect often on the “whys” and “hows” of Sofie’s condition.
“Why did we have a baby born with this? Why did we have to pray for someone else to pass on so our baby could have a liver?” Melissa ponders.
“I can’t imagine having my baby die, and then hearing someone say: ‘Would you please donate an organ?’ How could anyone to do that? But two people did, and we are so grateful.”
One day, Melissa would like to be able to thank the families of both donors, who she believes contributed equally to her daughter’s life.
“The first liver kept Sofie alive long enough for the second liver to work,” she says.
Now a vibrant toddler with a cherubic face and mischievous grin, Sofie seems the picture of a healthy child. Yet abdominal scars and medical treatments will remain with her always, reminders of the harrowing condition she was born with.
On Saturday, Sofie celebrated her first birthday. Later this week, the family will return to the beach to spend the last few days of spring break.
But Sunday morning, on Easter, the Blackmons will attend both services at the Church at Clayton Crossings to talk about Sofie’s past year. They will commit to raising Sofie as a Christian.
And they will celebrate the resurrection of a family strong in faith as they raise three healthy, happy children.