For the Stevenson family, having a child with Down syndrome meant ‘a lot of soul searching’
March 17, 2013
With studies showing an increasing number of expectant parents deciding to abort after learning their unborn child has Down syndrome, Kristin and Elijah Stevenson figured they better weigh their options 22 weeks into their second pregnancy.
The Stevensons have been living off and on in Steamboat Springs for 11 years. At that particular time, however, they were living in San Diego and raising their son Connor, now 6.
After an ultrasound, the couple learned there was a 25 percent chance their unborn child had Down syndrome. Kristin was shocked by what the perinatologist told her next.
"This puts you at a 1 in 4 chance, so this is probably about the time you might want to think about aborting," she recalled the doctor saying. "The thing with Down syndrome is they probably won't amount to anything at all. Are you ready for that? Is your marriage strong enough to handle that?"
She felt she was being encouraged to terminate her pregnancy based on statements she later learned weren't accurate.
As executive director of the Rocky Mountain Down Syndrome Association, Mac Macsovits has heard many similar stories. He said there is a lack of education about Down syndrome, even among some medical professionals.
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"They're not Down syndrome specialists," Macsovits said.
Dr. Mary Bowman, with Yampa Valley OB/GYN, was shocked and saddened to hear about Kristin's bad experience in San Diego. Such experiences do not happen in her office, Bowman said, and she questioned how common they are among medical professionals.
"It's a very personal decision, and the mothers need to be supported in that," Bowman said.
The Stevensons took seriously the gravity of their decision.
"A lot of soul searching and a lot of research," Kristin, who co-owns Steamboat Pilates, Yoga & Fitness, said about the process.
She called the Down Syndrome Association, which put her in contact with families who have children with Down syndrome. The couple also talked to friends, one of whom had a 2-year-old son with the condition.
"He looked at us and said, 'Don't you even think about aborting; this has been the most amazing experience of our life,'" Kristin recalled.
The Stevensons later met the couple and their son, Jacob, at a playground.
"I just remembered I have never seen that much love in a parent's eyes like that," Kristin said.
Elijah said he felt like there was a lack of support available for making the decision.
"That's where I struggled," said Elijah, who is transitioning out of the U.S. Marines, where he has been a helicopter pilot. He recently returned from a six-month tour in Afghanistan.
The Down Syndrome Association makes it a policy not to steer a family in either decision.
"That is a very private decision," Macsovits said.
After weighing their choices for four of five days, the Stevensons decided to keep their "chromosomally enhanced" child, whom they named Emmett. He's now 3, and his parents acknowledge it has been hard at times. Emmett had to have multiple surgeries to address a problem with his colon. He had three small holes in his heart, and he has undergone extensive speech therapy. Kristin is concerned about Emmett's progression through school.
But the Stevensons have no regrets.
Kristin said people often ask them what the experience has been like.
"The word that always comes up is 'magical,'" she said. "It's the only word I can think of that really resonates."
Emmett, like many children with Down syndrome, has specks in his eyes called Brushfield spots that look like tiny diamonds.
"When you're getting all uptight and upset, he will have a way of looking at me so calmly and so lovingly that it just cuts through," Kristin said. "He has a way with one glance, and it's magical."
Kristin described Emmett as genuinely and deeply content, and he rarely cries.
"They have to work for it a little harder," Kristin said. "It does build a certain characteristic in a person."
To reach Matt Stensland, call 970-871-4247 or email mstensland@SteamboatToday.com