BOSTON — When parents are told their child may be born with an extra chromosome, also known as Down syndrome, there are more questions than answers.
Until recently, much of the information on what life looks like for a person diagnosed with Down syndrome comes from old, incorrect and often offensive literature.
Dr. Brian Skotko at Massachusetts General Hospital is hoping to change that and has been working on several studies with the hope of bringing Down syndrome knowledge up to date.
"There are so many misperceptions that are out there," said Skotko.
Beth Allard agrees; when her son Ben was born 17 years ago, there were a lot of questions, but she just had to trust her gut.
"And I thought 'we're going to do this. It's okay,'" she said.
And the Allards say it has been, and Ben is a busy teenager with work, school, sports and a girlfriend.
"You just have to go with your gut and know that's it's all going to work out, one day at a time," said Beth.
Skotko is a leading researcher in this field and wants to give families accurate information.
He said about 125 expecting parents in Massachusetts each year decide to terminate after learning their child would be born with Down Syndrome. About 94 children are born in the state annually who have with Down syndrome.
"Down syndrome today is not Down syndrome yesterday. And that's not because the genetics has changed at all. It's because our society has changed," he said.
He says many parents think raising a child with Down syndrome is costly. His research shows that's not necessarily the case, with the average monthly medical expenses being $80.
What's more is that his research shows they're enriching their families.
"Ninety-nine percent of mothers and fathers say they love their child with Down syndrome. And when you ask brothers and sisters 88 percent of them say they're distinctly better people because of their sibling with Down syndrome," he said.
He said expectations in the past have set limitations that people with Down syndrome are shattering.
Skotoko said that he'd like to see more funding for research related to Down syndrome. He says people with Down syndrome rarely get breast cancer or certain types of tumors, and that means people with this extra chromosome may hold clues to the medical mysteries that impact all of us.
For resources on Down syndrome, visit this website.
Cox Media Group