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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

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Monday, October 11, 2010

31 for 21-Day 11- Down syndrome and preconceptions of the medical community

When Meghan was born, the pediatrician we saw gave us bad advice, he was bigoted towards our daughter, and we were horrified by him suggesting we just leave our newborn baby there and walk away from her. We thought it was an isolated incident, but we learned in the 9 years since that we were not alone in getting outdated and bigoted advice.



When Meghan was a baby, I poured over the Internet looking for articles about Down syndrome, not many were encouraging. truly, the more I read, the sadder I got, my heavens, was life really so bleak with a child with Ds?



A few months after we brought Amanda home in 2008, we learned George Bush signed a bill into law that all of us in the Down syndrome community hoped would save the lives of prenatally diagnosed infants. However our excitement was short lived. A pharmaceutical company had concurrently developed a test for Down syndrome that could diagnose it (and other genetic disorders) in early pregnancy. There is only one reason for this test, to give the parents the chance to abort an early pregnancy as opposed to a 5 month pregnancy. I am positive the researchers were not hoping to give parents more time to prepare for a baby born with Down syndrome, I believe they developed this test so parents would abort the so-called defective fetus.



I have spent more time looking up articles, so yes, a depressing subject for some, sorry, you can stop reading now. I think the information needs to be shared. I have color coded each quote that goes with it's respective URL. The quotes are from those texts, and not written by me. If you wish to read the articles or studies, click on the links. All my own words are written in black.



This is an older article, and therefor the idiom is from that time, however, this is an important subject, do people with Down syndrome and other groups with cognitive delays get substandard care, and do doctors deny them proper care simply because of their delays?



http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2594795/pdf/jnma00296-0105.pdf

(from this article above)
In 2002, the office of the U.S. surgeon general published are port detailing the discrepancies between the quality of health care afforded to persons with and without mental retardation. This article examines the case of a female resident of a developmental center with profound mental retardation due to Down syndrome and degenerative hip disease. Although she was in urgent need of a total hip replacement, the operation was denied or delayed by several different surgeons. Using a survey of physician attitudes, we examine several possible motivations behind the surgeons' reluctance to perform the procedure and conclude that these reasons were not appropriate in this case. Finally,we reiterate the surgeon generals call to eradicate preconceptions held in the medical community about the population of persons with mental retardation that result in similar failures to provide adequate care.




http://abcnews.go.com/GMA/OnCall/story?id=1207054&page=1



(from ABC news)



Negative Reaction from Doctors


In a recent survey, mothers of children with Down syndrome reported physicians are overwhelmingly negative when diagnosing fetuses and newborns with Down syndrome, often advising the mother to discontinue the pregnancy or to put the child up for adoption.



http://www.brianskotko.com/ if you want to read more about the doctor and author of the following studies.



This PDF discusses prenatal diagnosis and parents thoughts.

http://www.brianskotko.com/images/stories/Files/ajogfinalprenatalmanuscript.pdf



According to this study, a woman with a prenatal diagnosis has a more positive birth experience than a woman, like myself, who finds out after the birth of their baby. However, I have talked to many women personally who were still hurt by their OB's assumption that they would terminate their pregnancies. In fact quite a few said they had calls from their doctors asking when they wanted to schedule their abortions. A 92% abortion rate following prenatal diagnosis indicates that physicians continue to paint a bleak picture of the infants future.



This PDF discusses thoughts and feelings of mothers who learned of the children's Down syndrome diagnosis after the birth of their babies.



http://www.brianskotko.com/images/stories/Files/pediatricsmanuscriptfinalversion.pdf


“In general, what I was taught in medical school and in my training is that disability—no matter what its form—is a bad thing and to be avoided at all costs.


Lectures or seminars on DS or other genetic syndromes were geared toward the description of the abnormalities . . . that children with congenital diseases
may find their lives to be rich and valuable was hardly recognized, much less stressed,” wrote perinatologist Steven Ralston. 11




Yes, so many doctors seem to give outdated advice concerning a Down syndrome diagnosis, a few of my friends who have children with Down syndrome had very positive experiences, but they seem to be the exception.



When we had Meghan, not one doctor told us about support groups, or national Down syndrome organizations. Though they seemed thrilled to have a Down syndrome specimen for their teaching hospital, and merrily checked out all of her Down syndrome features...picture a couple trying to come to terms with their daughters diagnosis and heart issues watching 5 interns flipping their newborn on her tummy so they could look for abnormal skull shape, or neck issues, and such. They were insensitive, and we had to put a stop to their actions, and with the help of our (8 year old) Julia we did, as we have discussed before. I will never forget her admonishing them; "She is not a lab rat you know". Indeed she was not. At that point forward we denied all the tests they wanted to perform on our new daughter, none of them were for suspected issues, but instead so the interns could "practice" them on our daughter. I do not believe many of them saw her as a human being worthy of their respect. Only one, Dr Bobby, ever treated Meghan with tenderness, and maybe that is why she dislikes doctors so much now? (I have spoken about this before, obviously I have some anger issues surrounding it)



The pediatricians were not supportive of us as a family. It was not until Meghan was diagnosed with trachealmalacia that we learned about early intervention and support groups. We were in the pulmonologists office and happened upon an old friend, Susan Daniels, who served on the Southern Arizona Fitness Association board of directors with me. She saw me holding Meghan and asked who we had been in contact with concerning therapy, etc, we said NO ONE. She gave us a notebook from Pilot Parents and phone numbers for DDD. The supportive mom from Pilot Parents peer to peer support, D, guided me in those early months, she told me about The Down Syndrome Connection. Without that chance meeting at the pulmonologists, I am certain it would have been a few more months before I learned of all the support readily available in town. Our pediatrician failed us miserably. Why didn't they have the information we needed to get support from other parents, and why didn't they tell us about early intervention when Meghan was born?



(more from the above PDF)

Did the mothers who had their children with DS in 1965 report
different experiences than the mothers who had their children in
2003?



The majority of mothers thought that, when their physicians talked about DS, they neither talked about nor emphasized the positive aspects of the
condition. In contrast, approximately on half of the mothers mentioned that their physicians talked about or emphasized the negative aspects
of DS.



Some mothers reported that their physician’s explanations were insensitive or factually incorrect. A mother who had a child with DS in 2001 recalled
that, when she received the diagnosis, “The doctor then asked if we understood that this meant that she would never live on her own or hold a job. This doctor was the ‘expert.’"




And finally,
Communicating the postnatal diagnosis of Down’s
syndrome: an international call for change


http://www.brianskotko.com/images/stories/Files/italianjournalofpediatricsfinal.pdf



About half of the mothers in the United States suggested that their physicians talked about negative aspects of DS (such as, medical complications and cognitive difficulties),and some reported that their pediatricians
emphasized these aspects. The same responses could be found in Spain, but the majority of these mothers reported that their physicians did not talk about the positive aspects either, suggesting that they received little to no information at all (Tab. II).


Mothers from both countries expressed a wish that they had learned of the diagnosis as soon as their physicians suspected it 1 25. They took note of the “silence” that seemed to surround their child’s birth, sensing that their
physicians were trying to avoid telling them something.



Mothers reported that this hesitancy by physicians only contributed to mounting fear and anxiety. Many of the mothers also reported, with anger, that they were informed without their partner present and often in a
public setting.




That was how the Prenatally and Postnatally Diagnosed Conditions Awareness Act came to be signed into law 10/08/2008

http://www.govtrack.us/congress/bill.xpd?bill=s110-1810



http://www.dredf.org/InfoSheetBrownbackKennedy.pdf
What the Act Will Do :


The Act will provide more comprehensive information and support to pregnant women and new mothers whose fetus or newborn is diagnosed with Down syndrome or another condition. The Secretary of the Department of Health and Human Services is now authorized to:


Collect and disseminate evidence-based information on Down syndrome and other conditions diagnosed either through prenatal genetic testing or screening or in the 12 month period beginning at birth.


Establish a resource telephone hotline for new or expectant parents.


Expand and further develop local and national networks for peer-support, outreach and information to parents.


Establish awareness and education programs for health care providers who talk to parents about prenatal genetic testing.


Set up a national registry or network of local registries of families interested in adopting newborns with Down syndrome and other conditions.



However, while this bill was a victory for parents who support disability rights, a pharmaceutical company was celebrating:


http://www.patriciaebauer.com/2008/09/25/kennedy-brownback-3-3302/



While the bill has been making its way through Congress, the development of prenatal tests has been causing excitement among investors who say the market for accurate testing tools has multi-billion dollar potential. Just this week, the stock of Caliifornia-based Sequenom Inc. has jumped more than 30 percent on an announcement that it had conducted a successful study of a new prenatal test.


Sequenom reported that its SEQureDx test detected Down syndrome accurately in the first and second trimester of pregnancy in about 200 samples with no false positives or false negatives, matching earlier data from another 200 samples.



For many women of childbearing age, this was another test they could have to ensure they gave birth to that proverbial perfect infant. To millions of mothers who had children with Down syndrome, this was an attack on the existence of their beloved children. As I looked upon my three wonderful (and sometimes annoying and just like other children) daughters and read about this prenatal test, my heart sank.



Every time it felt like we were gaining momentum on acceptance and support of our children, the medical community announced they found more ways to kill them before they were born. They were saying my children were not worthy of life simply by applauding this new test. The ACOG was ecstatic! They supported this new test 100%, just think, no woman would ever have to suffer the birth of a Down syndrome baby again! (I used the term Down syndrome baby because this is the way the medical community describes my children)



Thankfully there was a problem with the research procedures of SEQureDx, and the release of the test was delayed:

Sequenom Reports Delay of Release of SEQureDx Trisomy 21 Test



However, they have not given up:

http://www.newsrx.com/health-alert/3422.html



"Sequenom is committed to developing the next generation of prenatal diagnostic tools that will provide physicians with the capabilities they need to noninvasively diagnose genetic disorders early in a woman's pregnancy," commented Dr. Stylli. "We believe these unique, noninvasive digital technologies have the potential to dramatically impact the prenatal diagnostic market and we look forward to advancing these innovative approaches as part of our long-term strategy to expand our prenatal diagnostics franchise."



http://www.medicaldevicestoday.com/2008/11/down-syndrome-diagnosis-sequenom-moves-closer-to-noninvasive-test.html



They are excited about profits and their research.



I wonder how many of these scientists embrace eugenics?

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