Diana came into the world blue and limp. Immediately, her pediatrician intubated her and gave her oxygen. When she was stable, x-rays were taken that showed an abnormal elevation of her diaphragm over the right side. The diaphragm is a muscle that separates the chest from the abdomen and is essential for breathing. When part of the diaphragm protrudes into the chest, a condition called eventration, the child cannot breathe properly and becomes blue from lack of oxygen. If oxygen deprivation continues for a few minutes, damage to the brain, heart, and other organs occurs.
Diana had a stormy course at the hospital in her infancy. She needed oxygen for 6 days, digoxin to stimulate her heart, intravenous fluids, and antibiotics. She slowly recovered, but the lack of oxygen had already damaged her brain. This caused weak muscles and poor sucking and swallowing. Doctors advised Diana’s mother to stimulate her daughter’s lips and mouth by offering baby formula and massage, which she did patiently so that Diana could suck better. Because there was no improvement, eventually Diana needed to be fed by a tube through her nose. Her mother became very adept in inserting the tube for feeding purposes.
As the weeks passed, the effects of Diana’s brain damage became apparent. She could not swallow the formula properly, and when solid foods were tried, she choked. Consequently, she had very poor weight gain. Tests showed that Diana had gastroesophageal reflux, and eventually an operation to correct the reflux was performed. When the surgery did not help, a tube was introduced through Diana’s abdominal wall into her stomach to facilitate feeding. Thus, to some extent, her feeding problem was resolved.
As the years passed, Diana developed dislocation of her hip and scoliosis. Despite these physical handicaps and mental disability, and with her mother’s constant encouragement, Diana slowly learned to speak, first single words, then a few simple sentences with a drawl. Her apprehension in my office slowly vanished, giving way to smiles. I was happy to see her progress.
When Diana was 11 years old, one day, when coming out of the examination room, I saw her moving her hand in a peculiar way.
“What is she doing?” I asked her mother.
“Diana, show it to the doctor,” her mother prompted.
Diana slowly made a fist of her left hand and extended her thumb. She gingerly smiled and said, “A.” Then, ever so slowly, she extended her fingers and put her thumb across her palm and said, “B.” I realized that Diana was proudly showing me the alphabet sign language she had learned. I was flabbergasted.
I was also amazed at her mother, who for 3 years, day after day, patiently taught Diana the sign language. Because of her persistent efforts, Diana improved little by little.
These mothers who strive day by day, against all odds, to improve the quality of life for their children with cerebral palsy or mental retardation are to be commended. In my view, they are all heroes.
The Lord looks for angel volunteers who are willing to help developmentally disabled and physically handicapped children. He asks those angels to come down to earth.
We call them mothers.
DR RAO is in private practice at Sequoia Family Medical Center in Porterville, California. He is an author, columnist, and a member of Porterville Writers Group.
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