Shelley and Ed Harris didn't learn how to recognize the different types of cries from their baby, Clinton. Not that they aren't good parents; they are great parents. But, because of Clinton's tracheotomy (a tube inserted in the throat for breathing) as a result of his rare genetic birth defect, he doesn't cry or make sound.
In June 2003, Clinton entered this world as the product of a perfectly normal pregnancy. He was born with Pierre Robin sequence, a combination of birth defects which usually includes a small lower jaw, cleft palate and tendency for the tongue to ball up in the back of the mouth. Pierre Robin occurs in about 5 to 22 babies per every 100,000 births.
A byproduct of the birth defect is respiratory distress. Immediately after Clinton's birth, he wasn't breathing. Michael Wagnon, DO, Shannon Clinic pediatrician, and the nursery nurses detected an internal cleft palate and the appearance of the syndrome. Within six hours, Clinton was at Cook Children's Medical Center in Fort Worth, where he would spend the first six weeks of his life.
"We were very traumatized when Clinton was born," says Shelley. "I worked until the morning I delivered Clinton and had no inclination that anything was wrong. I knew something was wrong at birth because his color was bad. When I went to the neonatal intensive care unit, I held him briefly for a minute before he was airlifted to Fort Worth. Ed and I were just numb."
After six weeks, Clinton came home and the Harrises began learning how to care for him. Clinton's tracheotomy requires frequent suctioning. As with many Pierre Robin babies, Clinton is fed through a tube and has reflux issues.
"He doesn't make typical baby sounds, but he does make his own unique types of sound and we know them all very well," Shelly says. "Clinton is a wonderful child and is the best thing to ever happen to Ed and me. He is so very happy and rarely gets mad. Because we cannot leave him alone quite yet, Ed and I spend most of our waking moments with Clinton and that is a blessing."