Oct 27, 2008 - 04:05:17 CDT
Born May 17, little Mark Austin Hettich, now 5 months old, is Santana Thomas' and Mark Hettich's first child.And might be their only one, said Thomas, 19, of Solen.
When results of chromosomal testing on the baby come back sometime in November, it should reveal whether Mark's neurological condition was a fluke or the result of a genetic incompatibility between his parents, Thomas said.
Born weighing 6 pounds, 2 ounces, little Mark was a perfect baby, Thomas said. He slept beautifully, seldom cried. But at around 3 months old, he had his first bad seizure, she said.
When a CT scan didn't reveal the problem, the baby underwent an MRI. What that showed was an early developmental disorder called lissencephaly, which translates as "smooth brain." Thomas said the doctors told her that sometimes the condition affects only a portion of the brain, but in Mark's case, it was the whole brain.
Lissencephaly is a rare neurological disorder which can result in problems from cerebral palsy to developmental delays. Worst case - which she doesn't believe applies to her baby - little Mark might only live until age 2. Or he might be fine; "you can't tell until he's older," she said.
"Ihope it's not as bad as they say," Thomas said.
Meanwhile, the baby comes to St. Alexius Medical Center in Bismarck once a week for therapy. Therapists are helping Mark to learn how to grasp with his hands and strengthen his stomach muscles so he can learn to crawl and do all the typical baby stuff, Thomas said.
Since the baby's condition is considered developmental (rather than, for example, the result of injury), "we're focusing on milestones, as many as he can reach," said Mary Kay Flemmer, licensed and registered occupational therapist at St. Alexius.
Little Mark's weekly therapy sessions there concentrate on improving muscle tone, strength and coordination, and visual, motor and perceptual skills, she said.
"Santana's goals are the most important thing," she said.
Because of the baby's diagnosis, his challenges will be using his arms and legs in a coordinated fashion, moving in his environment, holding things as he is eating, she said.
Mark's degree of challenge from lissencephaly is hard to predict, Flemmer said; some children are mildly affected, some profoundly.
So instead of focusing on "what could happen,"therapy's goal is for him to reach the next thing Santana would like him to do, "mini-milestones," Flemmer said, "those little tiny steps."
Children with development conditions are usually seen for a lengthy period of time, she said; visits may taper off when children are able to do age-appropriate things, or no longer need things adapted.
Usually, from ages 0-3 children are seen intensely, Flemmer said, often for both medical-based services, such as Mark's weekly therapy sessions, and early intervention, in which therapists teach parents how to incorporate therapeutic techniques into the child's everyday care and routines.
"To make things as easy as possible, put things in their natural routines," Flemmer said. That might mean incorporating stretching exercises into diaper changes, helping babies put their hands up to hold their bottles during feedings, "his natural activities during the day,"she said.
Because the baby's condition can involve seizures and developmental delays, Thomas and Hettich decided that she would become a stay-at-home mom, Thomas said.
It's hard to watch the baby have seizures, which can be bad or they can be unnoticeable, she said. Either way, "I can't leave him with someone who might not know what to do," she said. "I don't feel comfortable with anybody else watching him."
So at home, she works on his therapy four times a day.
Mark is the first great-grandchild on both sides, and the baby's diagnosis hit everyone in the family really hard, she said.
The reality of little Mark's situation only hit her just recently, she said, "but I think I'm going to be OK. I'm trying to take it day by day and work with him more."
"He's a very happy baby. He lights up your life," she said.
Thomas has plans for both herself and her baby: If the results of Mark's chromosome testing rules out more children, there's always adoption, Thomas said. She'd also like to take online classes, she said, and eventually become something like a special education teacher.
As for little Mark, when he gets older, his mother said she'd like to teach him how to get through everything and not give up.
In the meantime, the family is hoping that people will pray for him, she said.
If people do have concerns about their children's development, specialists are willing to help in-home or in medical settings, Flemmer said.
More information is available at www.lissencephaly.org.
(Reach reporter Karen Herzog at 250-8267 or karen.herzog@bismarcktribune.com.)
MomofToddler wrote on Oct 27, 2008 3:31 PM:
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