Jennifer Boutros will always remember Christmas 2006. Matthew, her week-old baby, was in the critical care unit of Children's Hospital of Philadelphia, struggling to recover from emergency open-heart surgery.
He was swollen and his chest was open, covered by just a thin dressing. A tangle of tubes and pumps was delivering medication to keep him alive and pain-free. A ventilator was breathing for him.
During the seven-hour surgery, Jennifer and her husband, Sam, had held each other, crying. Sam kept saying, "I can't believe our baby is having open-heart surgery. I can't believe this is happening to us."
Jennifer, a labor and delivery nurse, and Sam, a computer engineer, had to make a decision. They could celebrate the holiday at home with their three other children, struggling to maintain some degree of normalcy. Or they could stand by Matthew's crib and hold his hand as he fought for his life.
"Christmas morning was awful," Jennifer recalls as she watched her three older children, Tyler, Mark, and Lila, tear open their presents before leaving, as a family, for the hospital.
They were almost at the door when the phone rang. Jennifer's heart skipped a few beats. All of her extended family was with her "so it had to be the hospital, and I knew it couldn't be good news."
The doctor's voice was urgent: "Jennifer, I'm really sorry. Your son is dying and I'm going to make a last-ditch effort to remove the fluid that is clogging his lungs."
The surgeon said she didn't have enough time to get to the hospital and hold him one last time before the procedure. "If I don't do it now, he will die," the doctor told her. Jennifer began to sob. "You never get over hearing those words. I was heartbroken, crying, and I thought, 'My baby cannot die. It's Christmas.' "
Matthew had been born with a rare, complex cardiac defect - total anomalous pulmonary venous return - and two holes in his heart.
His full name, Matthew Gabriel, means Gift from God. "When we chose it," his mother says, "we didn't know what a precious heaven-sent gift he would turn out to be."
Somehow, Matthew returned from the edge that Christmas Day and survived the delicate procedure that saved his life.
But that was only the beginning. His eight-week stay in the cardiac intensive care unit of Children's became the roller coaster the nurses had gently suggested it might be. The fluid around his heart diminished but the fluid around his lungs lingered. Tubes protruded from his chest for almost a month.
He needed a 24-hour electroencephalogram to measure brain activity and many MRIs to check on the small brain bleed found soon after his birth.
It wasn't until Matthew's ventilator was removed four weeks later that Jennifer could finally rock her baby boy in her arms.
"I cried, the nurses cried, all tears of joy," she says. "We were in love, Matthew and I, and it was the best feeling ever. Finally, I wasn't helpless anymore. I could do something for my baby, and I can't tell you how many kisses he got that day."
Two months into the new year, Matthew was being prepared to come home. He had to be weaned from the medication used for pain and sedation, a process that took several months.
Jennifer and Sam had to learn to feed him through a nasogastric tube that snaked through his nose into his stomach. They had to pass courses in CPR, and Matthew had to pass a simulated car-seat test in which his breathing, heart rate, and oxygen levels would be monitored for the hour-long drive home to Bridgeton, N.J.
"I couldn't wait," his mother says. "Our family couldn't wait. But reality was starting to set in. Matthew was going to be my responsibility. Would I be able to do it? My head was spinning, and I remember falling to the kitchen floor shaking, crying, hysterical. I was having a panic attack. I prayed that God would give me the strength to take care of this gift he had given me, this gift that was at last coming home."
Bhavna Patel has been Matthew's pediatrician since he was two months old. At the time, his future was uncertain. Would he ever walk and talk? Could he go to school and learn? Could he take in enough food to nourish his frail, healing body?
"Most kids, when they have been tube-fed for so long, develop an oral aversion," Patel says. "They don't know how to suck or swallow. When Matthew first came home, he didn't know how to drink from a bottle, and from a cardiac standpoint, he wasn't strong enough to eat; it expended too much energy."
Six months later, with his future still in doubt, the family received the next ominous phone call from Children's. Matthew's cardiologist wanted him to be seen by the neurology department.
"What I heard that day was mind-altering," Jennifer says. "I was told that during surgery, Matthew had suffered a perioperative left frontal lobe stroke. Stroke? I was stunned and speechless."
However, neurologist Rebecca Ichord had encouraging news. "It's amazing, but I can't find anything neurologically wrong with your son, none of the deficits I would expect to see in a six-month-old baby who had had a stroke," she said.
"We cried all the way home," Jennifer says, convinced yet again that "our son was truly a miracle."
Patel agrees that Matthew is remarkable. She credits his progress to the savvy medical expertise of his mother and the early mind-set that his care would be a family affair.
His oldest brother, Tyler, learned how to feed Matthew through his tube and help with his breathing treatments. Lila knows how to disconnect his pump. Mark is learning how to clamp his feeding tube and flush it with water. "Without this scenario, I think we'd have a very different story here," Patel says.
Today, having recently celebrated his sixth birthday, Matthew jumps and runs and has begun to take food by mouth. His parents are thrilled to let him eat anything he wants, treats that other children campaign for, such as french fries, hot dogs, and Rita's water ice. His favorite flavor is root beer.
"Matthew is the kind of kid that as soon as you see him, you want to take him in your arms and hug him," Patel says. "We can't use his personality to judge how sick he is. I can hear pneumonia in his chest and he keeps smiling. When he comes in, you know he's there because everyone is clustered around him. He is a joy. . . . he's inherited his mother's personality."
"The hardest part of all of this is differentiating between being a mom and being a nurse," says Jennifer. "I'm the one Matthew comes to for everything and the one who does the medical procedures at home. I have to change his MIC-KEY button [the device in his belly through which he is fed] every three months; it hurts him. But I know I have to do it. When we're done, he cries. Sometimes I cry."
Matthew doesn't recall what he has lived through. Every so often when he notices the scars on his belly or arms, he asks his mom, "Why do I have these? No one else has them."
"I'm so grateful I had my baby given back to me," his mother says softly, wiping away tears she can't hold back. "We almost lost him on a Christmas Day, but God gave him a second chance. Now I see him grow and thrive and achieve milestones. To watch him painstakingly write his letters on his little easel chalkboard with his stuffed dinosaur and puppy as his audience takes my breath away.
"Christmas for us is a big deal. It rekindles the memories and gives parenting a new meaning."