Medical

New Mass. Law may help curb Down syndrome abortions

When my son, Wyatt, was diagnosed prenatally with Down syndrome, I didn’t know at the time how fortunate I was. I had a doctor who was extremely positive about the diagnosis. He never pressured me to have an abortion, and throughout the remainder of my pregnancy, he never made disparaging comments or put a negative spin on what Wyatt’s life would be like. To the contrary, the remarks he made were often along the lines of “well, when he’s playing soccer five years from now…”. He also immediately offered to give me the information for local Down syndrome support groups, as well as national Down syndrome organizations. He also made sure to tell me how far the medical community has come in regards to treatment of Down syndrome, and how people with it are living longer, fuller, richer lives than ever before.

Unfortunately, this is not the experience for most women in my shoes. As I’ve noted before, several studies have found that when women receive a positive result for Down syndrome, doctors often put a negative spin on it and pressure the women to terminate the pregnancy. Yet somehow, it is the prenatal testing that is blamed for the appalling abortion rate of babies with Down syndrome – 9 out of 10 – and not our overall societal attitudes towards it (see this post for a perfect example), and especially the attitudes of those in the medical community.

Fortunately, though, the state of Massachusetts has passed a law that may put a dent in the number of babies with Down syndrome aborted simply for having an extra chromosome.

Massachusetts has become the most recent state to pass legislation requiring doctors to give parents who have the prenatal diagnosis “up-to-date, evidence-based, written information” about the physical, intellectual and developmental outcomes of the chromosomal disorder, and treatment options. Both Virginia and Missouri have similar laws; national legislation was passed in 2008 but remains largely unfunded.

… “We knew with these new prenatal tests, there would be an even greater need for parents to have accurate information,” says Maureen Gallagher, executive director of the Massachusetts Down Syndrome Congress (MDSC).

The new law specifies that the reading material given to women after a prenatal diagnosis be compiled from professional medical groups including the National Society of Genetic Counselors and the American College of Obstetricians and Gynecologists, along with local and national Down syndrome organizations. Studies have found that women often report that the information they currently receive is incomplete, inaccurate or offensive.

… Massachusetts’ new law also requires that families receiving a diagnosis be given contact information for First Call, a program of MDSC that links expectant and new parents of children with Down syndrome with families who have affected kids. “We were connected right away with another mom, and that is something I will never forget,” says Rosalie Forster, who learned that her daughter, Hope, had Down syndrome after her birth six years ago.

While it is said that this isn’t a pro-life or a pro-abortion bill (it’s being called “pro-information”), I can’t help but think that this new law has a decidedly pro-life feel to it. The aim seems to be to at least get women to think twice before following through with a knee-jerk reaction to have an abortion based on the diagnosis.

After all, there has never been a better time in history to have a child with Down syndrome. They’re living longer, healthier lives than ever before. They’re going to college, getting married, having families. They are business owners and athletes (one young man with Down syndrome is even a rodeo rider!). Thanks to early intervention and better medical care, people with Down syndrome are able to do more than they have ever done before. Expectant mothers facing the reality of raising a baby with Down syndrome need to know that before they decide to kill their babies based on misleading information and negative, outdated stereotypes.

Would this completely solve the problem? No, but it’s a good step in the right direction, and more states need to follow suit.

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  • Ingrid P.

    That does sound like a good idea…no one should be coerced into abortion by being misled, and by  a doctor of all people! It’s also worth noting that there are many people willing to adopt a baby with DS, as well, from what I understand. So if someone really doesn’t want to raise that child, she still doesn’t have to kill him! 

    I actually think the TV show Glee does a lot for awareness of how full and rich the lives of those with DS can be; the main character who has it is sometimes funny, sometimes sweet, and sometimes a little mean–just like anyone else, in other words. 

    Those articles you linked though only go to show that there are cruel people with DS as well. Rodeos aren’t any fun for the animals used as props for humans’ entertainment.

  • Leticia Velasquez

    Cassie, I participated in a First Call training workshop on Friday in Connecticut, run by teh First Call director, Sarah Cullen of the Massachusetts Down Syndrome Congress. 
    She said they only got 21 calls from moms expecting a child with Down syndrome last year, but since Boston is one of the cities chosen to launch the new prenatal test MaterniT21 (given at 10 weeks using only mom’s blood, but with a 99% accuracy, this may replace amnio and CVS) they expect many more calls to come soon. Thanks be to God the Governor of MA, no prolifer, signed the bill requiring doctors give good information to moms, including the First Call number. 
    If you are a member of a Down Syndrome Parent group, please set up a First Call Program. Contact Sarah Cullen at scullen@mdsc.org Its an important means of spreading the truth about our wonderful children and supporting moms in crisis. 

  • Maggie deVries

    God Bless you and your family, I hope baby is well and mom too…..I admire women so much  who not only educate themselves but help others understand that life is precious, ….We lost two babies …was devastating, we were already blessed with two healthy children , so people assumed we should just forget about it and go on!  I had no plans to have another but came down with a terrible flu, that turned out to be a baby! I was so scared, EVERYONE  gave me their opinions….mostly get an abortion, do not put yourself through this a 3rd time!  I really had no support, even hubby was not excited like before, like I had done something terrible!! Before when our daughter was born stillborn, my other 2 kids were crying their eyes out, I tried to explain she was sick and would never have walked or talked, but they were like but that’s okay we would love her, we would take care of her…tell Jesus we want her back…It was the worst thing  I went through, and now here I was pregnant again ,( 2 yrs before, we had her,  I miscarried at 5 1/2 mths…kids were too little then to understand much)..I went to my OB/GYN  and the nurse was in a pure panic!! Dr came in right away and first words out his mouth were “do you want an abortion?” I was sick!!! how could this dr who cried with us over our baby girl…even ask this?  also at what 5 month? I think, he said he was going to do a test for Downs Syndrome  and  something else?  I was like, don’t bother! because I am keeping this one no matter what…and the tests can cause you to miscarry…. I had a healthy baby girl…(.I also had my tubes tied)…I have met many families with DS children and children with other disabilities, They are wonderful families…and their children get the best medical and education they can get for them….They are dealt a hard blow, but somehow they find the strength to get done what is needed…I truly do not believe God intended these babies to be disabled in any way, But I know he has given strength  and comfort to many …..It saddens me that many are living with so much less, because our government will take away the medical care and all the extra things needed for their childrens   well being you cannot make too much or the government agency cuts the benefits, and I do not know anyone who can afford to pay for all that is needed….My son with 2 healthy children pays hundreds a month with a $10,000 deductable…. YOU are all Heroes  ….  every life has value, every child is precious ….these little ones are Gods special babies, he can take an awful situation and give you a blessing you never imagined possible!  I am grandmother to 6 blessings who are healthy, we lost 2… and that was so sad for the moms…But I do believe someday we will all be reunited and be whole and healthy as God intended…May your life be full of little joys, special moments that you can hold in your heart….hug that baby for me…..