Is it so Hard to Provide Up-to-Date Information about Down Syndrome?
Maybe I know something you don’t, or someone…
“Down’s syndrome cases soar in Switzerland”
This headline ran last month in The Local: Switzerland’s News in English. The number of births that prompted this headline was 89 live births of children with Down syndrome over a ten year period. Pretty soaring, right?
This comes out to about 1 in 1000 live births in Switzerland. As a point of comparison, the current rate in the US is 1 in 830. In France, the current rate of live births of children with Down syndrome is 1 in about 1600.
As a further scientific point, according to the medical research website Uptodate.com,
“The prevalence of live Down syndrome births is predicted to be 1 in 634 births in the absence of selective termination of affected pregnancies.”
The Swiss article points to the surprise of professionals that families were not choosing “selective termination.” And frankly, considering the way that professionals share and present information about people with Down syndrome, I’m surprised too.
Let’s take Uptodate.com as an example. Their website claims “the most recent medical information into evidence-based practical recommendations…” The statement about live birth predictions, for example, has a direct reference source.
On that same page, titled Down Syndrome Prenatal Screening Overview, the next point is:
“There is a significant burden of disease: the syndrome is associated with morbidity and mortality in affected individuals and high financial and psychosocial cost to their families.”
This statement is also presented as fact but, not surprisingly, no correlating reference.
To be semantically fair, Uptodate.com uses the phrase, “is associated with” and that I can’t argue. There is misinformation associated with Down syndrome ranging from the guy on the street all the way up to websites claiming evidence-based recommendations.
Alright, Let’s do this.
“There is significant burden of disease,” this implies first that Down syndrome is a disease. It is not a disease; it is a condition in which a person has an extra chromosome. There are associated medical difficulties and disabilities that are more common in people with Down syndrome than the overall population. Many of those medical conditions are treatable, if not curable. I will address that in a moment.
But I also wanted to correctly understand the next phrase, morbidity and mortality. Diffen.com helped me to clarify:
“Morbidity refers to the disease state of an individual, or the incidence of illness in a population. Mortality refers to the state of being mortal, or the incidence of death (number of deaths) in a population.”
So, again, “There is a significant burden of disease: the syndrome is associated with morbidity…” or as defined above, the disease state of an individual. Although Down syndrome is of itself, not a disease, there are many medical conditions that can and often correspond with the condition. For example nearly half of all people born with DS are also born with a heart defect. Many children with DS have heart surgery and most display a full recovery with few, if any, additional complications. Another example is that about 15 percent of people with Down syndrome have an underactive thyroid gland (hypothyroidism), another condition that is commonly kept under control with medical attention.
In fact, previous to the applicable advances in medicine, people with Down syndrome did have, on average, considerably shorter life spans than the balance of the population. However, now the average life expectancy of a person with DS in the US is 60 years, perhaps making the mortality segment of UpToDate.com statement, let’s say…alarmist.
I wonder too, where is the scientific evidence that created the basis for their next claim: “high financial and psychosocial cost to their families.”
Children are expensive, it’s true. America is a capitalist society; perhaps with each prenatal test we should offer a cost analysis of the child to be born. How many people would still be parents then?
As far as the “and psychosocial cost to their families,” hm. I wonder about up to date evidence on that front because there are certainly surveys to the contrary. Mark Leach reported only last year about a survey of over 2,000 parents:
§ 97% were proud of their child with Down syndrome;
§ 79% felt they had a more positive outlook on life because of their child with Down syndrome.
So if UpToDate.com wants to include the most recent medical information, the line may instead read: “Though the syndrome is associated with morbidity and mortality, this is largely a misconception.” Or better yet, the editors should consider sticking purely with evidence based facts as they advertise. The information from Lettercase.org. , a pro-information site with free materials about Down syndrome may be a good place to start.
Perhaps those “soaring numbers” in Switzerland are a sign that expecting parents are actually getting information to make their own decisions about giving birth to their child. Alternately, evidence shows that France and its drastically different birth rate, continues to limit information and supports pressuring women into selective termination.
All I am asking for here in the US is medical informational websites and professionals to please be more pro-information and less fear tactic. UptoDate.com is only one example, but one less source of misinformation would still be a gain.
The thing is…
There are many facts that are hard to hear when parents or expecting parents hear the diagnosis or potential diagnosis of Down syndrome. But please, please, don’t confuse the issue with non-facts and outdated misconceptions.
I suspect I know something you don’t know. I know a person with Down syndrome who has changed the world, my world, for the better. He deserves more than what equates to a smear campaign given to medical professionals about the collision of science and miracles that is his chromosomal makeup.
And families and providers looking for accurate information deserve better than this as well.
- Join us to see our good life and adventures with Grown Ups & Downs, we’d love for you to stop on by…
- *Update Oct 9, 2015. After an initial request denied by “UpToDate” saying “We stand by the content of our topic.” — I noticed today that the initial open to the pubic information on Prenatal Screening has been updated and doesn’t include the biased language previously noted. Hurrah!