'Fighters' refuse to give up

Every morning, Brittany Moore wakes up wondering if today will be the day.

Almost a year ago, she discovered her 5-month-old son Robbie would need a heart transplant to stay alive.

"I keep thinking we're going to get that phone call," the North Augusta mother of two said. "I hope every day for that. It hasn't come yet, but I know it will."

Robbie, now 1, has a host of cheerleaders praying for him, but lost his biggest backer in May. His father, Nick Moore, drowned in a canoeing accident in Lake Murray on May 3.

Enduring the death of her husband of three years, remaining vigilant of Robbie's fragile state and raising her other son, Nicholas, 3, have given her little time to reflect on her trials, she said. Though it's been an emotional roller coaster, her late husband's unwavering belief in Robbie's survival keeps her going.

"He used to tell Robbie, 'Stay strong, because you're a Moore. We're fighters,' " Mrs. Moore said. "I got to believe that, because he's beat the statistics twice. God's got something planned for this boy, he's definitely putting up a fight."

The Moore family began the fight in October. Robbie's constant wheezing prompted his parents to take him to Medical College of Georgia Hospital's emergency room. They found out the breathing problems were because of respiratory syncytial virus, a common respiratory illness in infants. Doctors then diagnosed Robbie with cardiomyopathy, a chronic disease of the heart muscles.

"We would not have known if he didn't have the breathing problems," Mrs. Moore said. "His heart is three times the size of a normal heart, and it only does half the work."

About 350 children undergo heart transplant surgery each year, said Dr. Jeremy Ringewald, the medical director for heart transplants at Children's Hospital Medical University of South Carolina in Charleston, where Robbie is being treated.

Only about 60 of those children are younger than age 1 and suffering from cardiomyopathy.

Robbie's level of illness was quite rare, and his condition took a turn for the worse in March when he went into cardiac arrest at MCG, Dr. Ringewald said. Doctors advised he be transported to MUSC to receive a heart transplant.

"It's relatively rare for a baby to go into cardiac arrest," Dr. Ringewald said. "At best, one out of two kids survive it when it does happen."

In April, Robbie received a Berlin Heart, an artificial heart that serves until a heart transplant comes through, Dr. Ringewald said, adding that the child is on the top of the list for a heart transplant.

Robbie's fight to live helped the Moores stay strong in the face of the escalating stress of traveling back and forth from Charleston and dealing with mounting medical bills. The heart transplant alone will cost close to $500,000, and insurance won't cover all the medical expenses, she said.

"I've been paying something every month," Mrs. Moore said. "People have been donating money, but it's still tough."

Her extended family has bonded through the ordeal, not only for moral support, but to help with trips to visit Robbie in the hospital and baby-sit Nicholas, she said.

"There were times when we didn't even see each other, because we had to have opposite schedules at work," Mrs. Moore said. "We were under so much stress, but we knew we had to do what we had to. We loved each other, and we had two families that loved each other so much."

Lynn Lambert, Mrs. Moore's mother, said her daughter and Mr. Moore, 29, were young parents who didn't let the stress of caring for their sick child overwhelm them.

"We have always taught her that you never know what bumps and curves will be in the road," Mrs. Lambert said of her daughter. "It was always comforting to watch Nick, because he always jumped in there to love Robbie and Nicholas as well as really take care of them."

Mr. Moore had planned to pick up Nicholas and visit Robbie in Charleston on the day he died, Mrs. Moore said. Mr. Moore, who could not swim, flipped over in a canoe while on a trip with friends.

"I just remember when they showed him to me. It looked like nothing happened to him," she said. "I just wanted to kick him, and tell him to wake up."

A day after his death, Mrs. Moore was arranging the funeral and got a call that a heart was ready for Robbie. Several hours later, doctors decided to reject the heart.

"It was just a roller coaster," she said. "I was still digesting my husband's death. Then, I couldn't help but be happy when I heard that, but to realize it was a false alarm was hard. I'm still on an emotional roller coaster."

Mrs. Moore has taken off two weeks from her job at the Augusta Marriott since her husband's death. She admits she hasn't had time to grieve.

Emma Moore, Mr. Moore's mother, said everyone's strength has come from their belief Robbie will get better.

"When I go up to Charleston every week, I see my son in Robbie," she said. "He lights up and kicks his legs, and that makes me feel better."

Mrs. Lambert said she remains amazed by how well her daughter has handled the adversity.

"We want the heart yesterday, but she knows you have to have a lot of patience and a lot of faith," she said. "People tell us sometimes they feel so bad for us, but I tell them not to. We have hope."

Reach Stephanie Toone at (706) 823-3215 or stephanie.toone@augustachronicle.com.