When Kayden McClannahan, the son of Marta and Frank McClannahan, was born 8 months ago his prognosis was grim.
The Brainerd baby was born with Trisomy 18 syndrome, a chromosomal disorder that caused life-threatening conditions for Kayden. His jaw hadn't grown forward properly so his tongue blocked his airway. Shortly after birth he had surgery that corrected the malrotation of his bowels and intestines and had his appendix removed. His jaw was surgically broken in two places and metal bars were attached to his jaw on both sides of his face, which lengthened his jaw. Trisomy 18 also causes severe mental retardation, heart defects, low birth weight and other abnormalities.
Fifty percent of infants born with Trisomy 18 die before they reach 2 months of age. Most die within 2 years of birth, although Kayden may have a longer life expectancy because he only has half of the No. 18 chromosome.
But now, after five surgeries and a few more operations planned, Kayden is doing well for a baby who has encountered so many obstacles in his short life.
"They said he may have severe mental retardation, but there's no way," said his mother, Marta McClannahan, as she bounced Kayden on her lap. "He's been remarkable. Obviously we've had to change our lives drastically. But it's well worth it. Isn't it, Kayden?"
Kayden is developmentally delayed, but that could also be a result of his premature birth, she said. He's tripled his birth weight. He grabs toys, smiles, tracks objects with his eyes and just learned to roll over by himself a week ago, a movement that set off his monitors. At all times he is attached at the chest and foot with wires that attach to monitors that keep track of his oxygen levels and heart rate. He is fed through a feeding tube although he now eats a small amount of food orally each day.
Doctors at Children's Hospital in Minneapolis have tried twice to remove his tracheotomy, but they weren't able to because Kayden couldn't tolerate it. They'll try again after he has cleft palate surgery in two months.
Braden McClannahan, 3, can't wait for his little brother to have his tracheotomy removed. That means Tarzan, the kitten he got just before Kayden was born, can return home from his grandparent's house. But that changed when he saw how upset his brother was when doctors attempted to remove his tracheotomy this week and Kayden was struggling to breathe on his own.
"Just put the trach back in, Dad," Braden told his father. "It'll make him feel better."
One source of comfort that the McClannahans have found is the Internet. They had never heard of Trisomy 18 syndrome before their son was born, much less had ever met anyone else whose children had the same condition. Marta used the Internet to connect with other families who have or are going through the same situation.
They recently developed a Web site, Kayden's Place, for family and friends to keep updated on Kayden's condition and as a way to connect with other families whose lives are affected by Trisomy 18. Marta plans to go to a Trisomy 18 conference in Chicago this spring.
To check out Kayden's Place on the Web, go to www.geocities.com/kaydensplace.
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