Parents struggle with heart-wrenching decisions

Parents of children with Down syndrome say that doctors are partially to blame for the high rate of abortions when Down syndrome is diagnosed prenatally. A report by Ted Rowlands on CNN focuses on four-year-old Faith Mitchell, who is shown blowing out candles on her birthday cake, reading, painting, and interacting with family members. Other children with Down syndrome are also shown.

A couple who aborted a pregnancy after a diagnosis of Down syndrome say they don’t feel any guilt about it. They don’t want their last names used.

Unofficial transcript follows:

Rowlands: Faith Mitchell has Down syndrome, and considering the statistics, she’s lucky to be celebrating her fourth birthday.

The fact is that an overwhelming majority of parents who find out their baby will likely be born with Down syndrome choose to terminate the pregnancy. Many people, including Faith’s parents, believe doctors are partially to blame for the high rate of Down syndrome abortions which some studies put as high as 90 percent.

Lisa Mitchell: They give you a bleak picture. you go out there and you’re scared, you don’t know what to do …

Rowlands: The Mitchells say during those-gut wrenching minutes after the diagnosis they got the feeling that their doctors were pressuring them to abort Faith. The focus, they say, was on the medical difficulties many children with Down syndrome have, like heart trouble, and how hard they are to raise due to their learning disabilities.

Lisa Mitchell: They even told me that it could be a burden on my son as he grows up.

Rowlands: The Mitchells and others raising children with Down syndrome say they want doctors to give expecting parents a more complete picture, including the positive points.

Michael Mitchell: They’re special, they’re the most loving people you’ll ever meet in your life, and I think they deserve a chance.

Brian Skotko, Children’s Hospital Boston: Doctors are not prepared when it comes to delivering that diagnosis.

Rowlands: Dr. Brian Skotko, who has a sister with Down syndrome, authored a 2005 study while he was in medical school that showed that most parents of children with Down syndrome thought that doctors indeed focused on worst case scenarios.

The medical community has heard the complaints.

James Goldberg, American College of Obstetricians and Gynecologists*: As concerns of various groups are recognized, I think there is a tendency toward providing that information, and I think those guidelines are being developed to do that.

Rowlands: Joy and Jeff terminated a pregnancy more than two years ago after receiving a Down syndrome diagnosis. They didn’t want us to use their last names.They say the decision was very difficult for them but they have no regrets.

Jeff: I did not feel any guilt about it. I don’t think we did anything wrong.

Rowlands: They say they didn’t get the feeling that their doctors pushed them in any one direction, but they say many people made them feel bad for deciding to have an abortion.

Joy: Here we were going through a loss, and there are people out there, there are a lot of people out there, who look down on what we chose to do.

Rowlands: Since then they’ve had a child with no birth defects.

The Mitchells say they never considered aborting Faith, but are very careful not to judge anyone who makes that choice. Because they say as sure as they are that they made the right decision, they also know how difficult it is to have that decision to make.

[*Editor's note: James Goldberg was listed as a principal author of ACOG Practice Bulletin 88, issued in December of 2007, which calls for all pregnant women to be offered invasive prenatal testing for Down syndrome and other chromosomal abnormalities.]

This entry was posted on Monday, April 7th, 2008 at 5:30 pm and is filed under Down syndrome, NOT2BEMISSED, abortion, families, genetics, personal stories, prenatal diagnosis, public attitudes. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post