Three-day-old Sean Merrell Ivie is eating, which doctors said he wasn't supposed to do. He's breathing on his own.
And, doctors now say he may not have the rare and fatal form of dwarfism that medical tests predicted as 99.9 percent positive.It's been just one miracle after another for Sean, who was born at 2:21 p.m. Saturday, weighing 4 pounds 4 ounces and measuring 15 inches long. A Caesarean section was performed at the Ashley Valley Medical Center in Vernal.
Early on in the pregnancy doctors told his parents, T-Kay and Kent Ivie of Roosevelt, not to expect their unborn son to live more than a few minutes at most after birth. Ultrasound and other tests showed the baby had a rare birth defect called thanatophoric dysplasia, a type of lethal dwarfism characterized by extremely short and bowed femurs and short ribs, but with a trunk and head of normal size.
At the time, doctors suggested to T-Kay Ivie that she have the child aborted, something she had no intention of doing. She was determined her son would live, even if just for one minute, so his mother and dad and two older brothers could look into his eyes.
To prepare for his imminent death, the Ivies wrote his obituary, made funeral arrangements and bought a tiny casket lined with blue satin.
T-Kay Ivie said that although Sean does have short arms and legs, characteristic of dwarfism, doctors now believe he has brittle bone disease, or osteogenesis imperfecta - a disease that is not necessarily fatal, depending on where the infant is ranked on a "10-phase" scale. "It is something he can live with," Ivie said. "The doctors just come in and shake their heads. They call him a miracle baby."
Upon delivery, Ivie said, Sean wasn't breathing, and doctors thought they were going to lose him. "He was blue and the bottom of his feet were black . . . His grandfather, my father-in-law and husband stepped in to give him his name and blessing and he pinked right up," she said.
Sean was on oxygen Saturday and Sunday, but by Monday his mother said he was taken off the oxygen and is breathing on his own.
He's also eating, "which he wasn't suppose to do," his mother said. "And he's very alert. He's just beautiful!"
Because his bones are so fragile, he is held on a pillow to guard his small body from damage. He suffered a few fractured ribs in the process of delivery, but even his brittle bones may improve with time, said Ivie.
"We know we've got a rocky road ahead of us. It won't all be sunshine. But he's here!"
Mother and baby were expected to be released from the hospital Tuesday. On Wednesday they will travel to the University of Utah Medical Center where a group of specialists will examine Sean and run various tests.
And what about the small casket lined with blue satin that the Ivies had ready for their son's burial? Right now they plan to keep it - to use as his hope chest.