Nicole Springer’s 21-month-old daughter, Katarina, was not supposed to live past 11 weeks and was born with Down syndrome. But that information did not prevent Springer from making what she calls one of the best decisions of her life.
“She was a very wanted little girl,” said Springer, director of Texas Tech’s Family Therapy Clinic. “I had had miscarriages after my son was born, so I was getting a more intensive care during my pregnancy. There were some things coming up that we couldn’t explain, so we decided to have the test done. We were able to prepare for taking care of a child with special needs because we found out beforehand.”
In the hopes that termination will not be the only option presented to parents expecting a child with Down syndrome, Tech and Kansas State University researchers are working to develop a source of information that shows positive and negative sides of raising a child with special needs.
Springer and Briana Nelson Goff, a professor in family studies and human services at Kansas State, said they hope, as a result of their project, they will able to develop pamphlets with a balance of information on how parents can handle the diagnosis and realistic suggestions on how to move forward.
Springer said testing that can tell if a woman is pregnant with a child with Down syndrome is used as a bias for continuing or terminating the pregnancy but is not a fair look at how the child will live.
“So far we have found out that the information given by doctors is generally negative and kind of the worst-case scenario,” Springer said. “A procedure to terminate is presented sometimes as an only option. What parents need to know is that there are the options of continuing the pregnancy and adoption as well as termination.”
She said the option to terminate a pregnancy is sometimes pushed even after parents rule it out as an option.
“When couples have said no to termination, whether it be for religious reasons or because they know they will love their child no matter what, the issue is still being pushed,” she said. “Sometimes it goes as far as 23 weeks into the pregnancy, which is about six months. By then you can see defined fingers and toes on an ultrasound. That’s a fully formed baby.”
Chandice Covington, interim dean of the Anita Thigpen Perry School of Nursing, said communication techniques are taught to students for when they must speak with a family about their child possibly having Down syndrome. Students who work on genetics teams would mainly be the ones learning that information.
“A major part is how you deliver news, especially bad news,” she said. “It can be pretty powerful information, especially when dealing with these people’s children, and it has to be done right.”
Springer said the interactions between patients and doctors is one thing she and Goff are studying as part of their research.
“We hope we can take note of some of the questions and stories we have received and turn them into training tools for new doctors to study,” she said.
She hopes to have enough information by next fall to start putting the pamphlets together, Springer said.
“We have an incredible amount of information so far,” she said. “As of Monday we had 355 surveys that were completed. The survey consists of questions on a 1-to-5 scale and then some open-ended questions where they can tell us their story.”
After the surveys are complete, Springer and Goff will then sort through the information and will contact some of the survey’s participants for face-to-face interviews.
Both Covington and Springer said the problems children with Down syndrome face can make life difficult but still possible.
“There are a broad range of matters that could go wrong,” Covington said. “There is no way of predicting the level of retardation the child will have but an ultrasound will be able to tell if the baby will have heart defects or kidney problems.”
Springer said she hopes the research she and Goff are doing will make a positive difference and offer guidance to those who are faced with this difficult diagnosis.
“I’m not saying it’s easy, but raising any child is hard,” Springer said. “This is a do-able journey, but it’s not just doable, it’s incredible.”
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