" . . . I now have the chance to learn and to grow,
I will never give up, and I want you to know . . .I couldn't have made it without the support and the love
Of all my great new friends, and our God up above." - A verse from a poem written by Julie Nies and inscribed on a painting Nies gave to newborn ICU staff at Utah Valley Regional Medical Center.
Julie Nies, Cedar City, has presented Utah Valley Regional Medical Center neonatologists Ronald Stoddard and Steve Minton with a painting of her daughter, Madison Leigh, as a token of appreciation for the doctors' work in giving Madison life.
The painting, which has been hung just inside the newborn intensive care unit, shows Madison calmly gazing from an isolette while a ventilator helps her breath. Along the side of the painting, Nies inscribed a poem she wrote about her daughter's birth.
"I don't think I can pay enough for what they've done," Nies said, "but if I can give some of my talent for what they've done with their talent . . ."
Nies was 51/2 months pregnant when she was referred to Dr. Steven Clark, a perinatologist at UVRMC. Tests at a Cedar City hospital indicated an excessive amount of amniotic fluid surrounding the developing fetus, and its heart was positioned abnormally.
"Dr. Clark knew even before he did the sono-gram what was the matter," Nies said. "His first words were, `If this baby is born in Cedar City it will probably die.' "
The baby had, as Clark suspected, a diaphragmatic hernia: The muscle that normally separates the abdominal and chest cavities was missing. Consequently, all of the abdominal organs had developed in the upper right side of the chest. The lung that should have grown there was stunted, and was only the size of the tip of a man's thumb.
The cause of diaphragmatic hernia is not known. During 1988, six babies have been born at UVRMC with this problem, an unusually high number, said Stoddard.
"Normally you would expect to have one in every 3,000 to 4,000 births," Stoddard said. "We are trying to find a common thread among the births." (Approximately 4,500 babies are born annually at UVRMC.)
During surgery performed hours after Madison's birth in September, Dr. Dennis Vitale, a pediatric surgeon, repositioned her organs and built a temporary diaphragm out of a synthetic mesh material. Eventually Madison's own diaphragm will grow, and the mesh will be removed. Also, it is likely that the right lung will have some growth.
Since then, Madison's recovery has gone smoothly. Julie, her husband Michael and 5-year-old daughter Terrah have been living in the KOA Kampground in Provo since Madison's birth, and are looking forward to returning to Cedar City with Madison, perhaps in time for Christmas.
Doctors say Madison will be able to lead a normal life.
"They say she may not be a marathon runner, but then neither am I," said Nies.