DISABILITIES WEEK 100
By Daniel J. Vance
"The last seven years have been a little stressful," said Rob Kelly, 35, of Bluffton, Indiana.
And he's not kidding.
On July 18, 1997, he and wife Karen had their first child and Kelly immediately sensed something wasn't right. "When Robert was born, the doctor took him out of the room," he said. "That concerned us. Then he came back to say there was a small problem."
That "small" problem was spina bifida, a birth defect involving incomplete spinal development affecting more than 70,000 Americans. The Spina Bifida Association of America website says symptoms may include paralysis, hydrocephalus, bladder and bowel difficulties, and latex allergy.
"I'd heard the word (spina bifida) and knew it involved the spine, but that was the extent of my knowledge," said Kelly.
The Kellys within 24 hours had Robert transported to Fort Wayne Lutheran Hospital for brain shunt and spinal surgery. "We thought we were done with surgery then," he said.
Back home three weeks, Robert aspirated, turned blackish blue, and with pneumonia was sent to Fort Wayne. Soon thereafter the cycle repeated itself twice. Doctors in Indianapolis finally decided that Robert's aspiration was related to Arnold-Chiari malformation in which his brain stem had protruded into his spine.
In succession, he was placed on a "bi-pap" breathing machine, a "c-pap" after a permanent tracheotomy, and finally a night ventilator. Doctors inserted a gastro tube to feed him. He had paralyzed vocal cords, another brain shunt operation, and apnea episodes of delayed breathing lasting up to 35 seconds. All this and more happened before he was six months old.
In time, adding to the Kellys' stress was a desire for another child. "However, we wanted some space after Robert," Kelly said. "We talked it over with friends [of a child with a disability] who'd had another child." After weighing the 5 percent chance of having another child with spina bifida, the Kellys eventually had healthy Megan, now 5 months.
"Now we don't want Robert to feel left out because of [our attention to] Megan," said Kelly. "So far he doesn't. He adores her. Recently, we placed her in a swing outside Robert's view and he was very upset because he couldn't see her."
As for his mind, 7-year-old Robert knows his alphabet and numbers through 100 well.
"And he will always have a special place in our hearts," said Kelly.