April 24, 2006 12:42 PM
Down syndrome babies deserve a better welcome
Rebecca P. of Always Chaos at Our House forwarded this to me:
Grad Student Inspires New Bill
HMS/KSG student calls for sensitivity regarding Down syndrome
Published On 3/17/2005 12:00:00 AM
By KRISTIN E. BLAGG, CONTRIBUTING WRITER
Pregnant mothers of babies with Down syndrome will be told about the condition in a more sensitive and informative manner if Harvard Medical School and Kennedy School of Government student Brian G. Skotko has his way.
His recent study of the negative experiences of mothers who are told that their unborn children have Down syndrome has prompted an new bill in Congress addressing the subject.
The bill, introduced at a press conference yesterday and entitled the “Prenatally Diagnosed Condition Awareness Act,” seeks to provide current and positive information to pregnant mothers who are told that their children will have Down syndrome.
The congressional bill also asks that mothers be provided with further support after their child’s birth.
Down syndrome is a “genetic condition that causes delays in physical and intellectual development” and typically causes “mild to moderate impairments,” according to the National Association for Down Syndrome.
The bill—introduced by Sens. Edward Kennedy ’54-’56, D-Mass., and Sam Brownback, R-Kan.—will attempt to implement the changes Skotko discussed in his study, setting aside $25 million in federal funding to extend services that provide support to mothers.
Skotko called the introduction of the bill “a celebration for all families who have a child with Down syndrome.”
The bill draws on Skotko’s experiences at the Children’s Hospital in Boston where he noticed the “frustration, anger, and overall discontentment” of parents who receive a prenatal diagnosis of Down syndrome.
“The delivery of a diagnosis of Down syndrome doesn’t need to be a gloomy affair,” said Skotko, who himself has a 24-year-old sister with the condition.
In his survey, Skotko found that the announcement of the Down syndrome diagnosis is usually poorly done and mothers are often encouraged by doctors to have abortions or put their children up for adoption.
One mother who was surveyed described the way her genetics counselor explained the condition.
He “showed a really pitiful video first of people with Down syndrome who were very low-tone and lethargic-looking and then proceeded to tell us (in 1999) that our child would never be able to read, write, or count change,” read the survey.
“I was completely frightened when I was given the news,” said Beth Allard of Franklin, Mass., who spoke of her son Ben’s diagnosis at yesterday’s press conference.
Despite the dismal future doctors predicted for Ben, Allard describes her son as “amazing.”
“He’s done everything they said he wouldn’t do and more,” she said, adding that having a son with Down syndrome has “opened up our eyes.”
“We love him to pieces,” Allard said of her son, citing the “unconditional love, joy, and positive experiences” that came from Ben’s birth.
In his study, Skotko outlines seven recommendations for informing a pregnant mother of her child’s condition.
According to the study, doctors should use sensitive language when discussing the issue, provide up-to-date information about Down syndrome, and distribute information about local support groups. They should also emphasize that those with Down syndrome have the potential to contribute positively to their communities.
“We don’t want a world where parents feel driven to justify their children’s existence. We need to link parents with these programs so that they are equipped with all the information they need to hopefully make a life-affirming choice,” said Sen. Brownback at the press conference.
Posted in Babies, Disabilities, Down syndrome | Permalink
Comments
I think that this is a great idea and should be used for any kind of prenatal diagnosis. While pregnant with my first child we were given bad news at the ultrasound, a diagnosis of trisomy 18. They were not at all compassionate and pushed for the amnio so that we could abort the baby. I didn't get the amnio because it wasn't going to change anything and I didn't want to take the risk of the amnio. I now have a beautiful 3-year-old girl. She is the joy of our lives. She doesn't have trisomy 18 but she has Apert syndrome, she has been through a lot of surgeries, with more to come, but she is more than worth it. I have heard of study where they are able to get a prenatal diagnosis of Apert syndrome with ultrasound (it can't be detected on an amnio) and sadly 90% of the moms in the study aborted their babies. unfortunately there is too much outdated information out there about Apert syndrome.
www.apert.org
Posted by: Jasmine | April 24, 2006 3:04 PM
I am due with baby #6 in September and have read/posted on online forums dedicated to pregnant moms. I am saddened and shocked by how many of them seriously *consider* terminating pregnancies because of bad test results, justifying their decision by saying how cruel it is to bring a child with Down Syndrome into the world. They are so mal-educated (is that a word?). All their hear from their OBs and perinatologists are messages of doom and gloom.
I hope this bill is successful.
Posted by: mopsy | April 24, 2006 3:39 PM
Nothing galls me more than to hear a doctor give a family the news of a diagnosis in such a negative light....not just downs. The majority of the docs who have followed my son know me well enough from working with me to not give us news in a negative manner but just the facts. Where I currently work they don't know me so well and believe me my righteous indignation gets riled up when one of the docs gives news to families of the potential outcomes of 24 weekers like my son. One man's poor quality of life is another's joy and who are we to decide?
Posted by: laura | April 24, 2006 4:21 PM
I'm going to have to get my eyes examined? Did that say Senator Edward Kennedy? Actually caring for the "little guy" that he likes to talk about so much?
Good news either way
Posted by: Ross | April 24, 2006 8:03 PM
Wow, I really hope this passes. I had a horrible time with negativity when my test results came back abornomal. My son was speculated to have everything from spinal befida to dwarfism! He was also born prematurly and one nurse said:
"He's doing alright now, but you know he could die at any moment"
He's now a very healthy one year old but from what the health staff told me I never would have believed it.
Posted by: lauren | April 24, 2006 8:45 PM
How I wish they would do this for all birth "defects." The mothers and fathers who have decided to end their children's lives based on the callused opinion of their doctor is far too large.
Posted by: Sara | April 24, 2006 10:52 PM
Yay! Yay! and YAY! i am SOOO glad to hear this! We are (almost) 10 wks pregnant with our 4th child (2 living) and we declined the triple screen test simply because 1) we will not abort no matter what and 2) i don't want to have to put up with any negative feed back from the docs. Barbara, you wrote a manificent blog earlier on about to test or not to test, and ih ave to say that really helped my husband and I decide to not have this test done (although we did have it done with our two daughters). The last time i was in college was specifically in mind to work with Downs syndrome children, I can not imagine hearing that these sweet little blessings are something to fear or to kill, and my heart breaks everytime i hear of another mother contiplating to end the life growing within her because of all the negative things the doctors have told her. Hooray for this new bill!! *claps excitedly* i hope it passes!!!
~kristy
Posted by: Kristy | April 25, 2006 10:32 AM
I am glad you found this article interesting as well. There is no difference in the worthiness of one child’s life as compared to another. Life is precious and all are worthy of experiencing it.
Posted by: Rebecca P. | April 25, 2006 10:47 AM
I just found this on another site.Brian Skotko's website is up and running at: http://www.brianskotko.com/.
Posted by: Rebecca P. | April 25, 2006 12:52 PM
When i was pregnant with my son they told me there was a very good chance he was Downs Syndrome and tried to convince me to abort him. To make a long story short, i don't believe in abortion, he is here today and does not have Downs Syndrome. Even if he did i wouldn't love him any less.
Posted by: Neurotic Mom | April 25, 2006 2:01 PM
We are praying about adopting a child with Down Syndrome. Our adoption consultant knows to call us if she needs to place a chid with downs. It breaks my heart (and confuses me) when I hear about someone terminating a pregnancy because they found out that their child "might" have Down Syndrome! Hooray! for the bill!
Posted by: Faith | April 25, 2006 2:58 PM
We had the exact same experience as Neurotic Mom. Ultrasound. Second Ultrasound. Preliminary diagnosis of Downs with pressure to get the amniocentisis asap while there was still time to abort. We declined both the test and the abortion.
And yes, he was born perfectly healthy (not that an accurate diagnosis would have made any difference). (I wonder how many healthy babies are aborted by result of a misdiagnosis.)
Posted by: King of Fools | April 25, 2006 6:38 PM
I am so glad to have found this page. I just think this is wonderful!!!! I have a beautiful 3 month old baby with downs. When I first recieved the news I was given no information on the positive aspects. The only option that clearly was stated was abortion. I believe everything happens for a reason, and I could not imagine my life without my beautiful daughter. After I had Hannah I was even shunned by nurses and doctors in the hospital. Their looks and tones were anything but nurturing. I had a nurse in the NICU say to my mother, "Did your daughter now the baby was going to have down syndrome?," My mother replied with a yes of course. The nurse asked very rudely, "Well is she going to be able to handle that?" I was shocked! There were also nurses who I loved of course. This should stop. I love my daughter and I believe we are given what we can handle. My pregnancy should have been more enjoyable, instead of stressful. I was only given the negative aspects. My daughter is doing great, even better than what the doctors thought.
Posted by: Rachel Deurloo | April 29, 2006 11:15 PM
