The Prenatally and Postnatally Diagnosed Conditions Awareness Act
December 7, 2008 by Kristina Chew, PhD
Filed under Health
The Prenatally and Postnatally Diagnosed Conditions Awareness Act, also known as the Kennedy-Brownback bill, authorizes the use of federal funds to train doctors to inform parents about Down syndrome or other prenatally and postnatally diagnosed conditions with up-to-date information on child development and life expectancy. If funded at the recommended $25 million over five years, the bill would provide for referral networks, to connect parents who’ve recently received a diagnosis with parents of older children, as reported in today’s Eagle Tribune (North Andover). Dr. Brian Skotko of Children’s Hospital Boston—who has a nephew with Down syndrome—published a study of the results from a survey of more than 1,000 mothers (2005):
The central question was about how medical support could be improved for mothers who received a Down syndrome diagnosis for their children.
The women came from five states, including Massachusetts. Regardless of the region, they reported feeling frightened or anxious after receiving the diagnosis, and also feeling shocked, angry and depressed.
About half of the women said doctors talked about or emphasized negative aspects: that almost 50 percent of children with Down syndrome will need heart surgery; that they will need to see a specialist for their condition; and that they will need speech or physical therapy.
But that’s far from the whole story, Skotko said. Today, surgery, treatment and therapy are readily available and often successful. And a recent study showed life expectancy for people with Down syndrome doubled between 1983 and 1997, going from 25 to about 50 years old.
Also, children diagnosed with Down syndrome are routinely mainstreamed in public schools, Skotko said. And they are scoring higher on standardized tests. Many of them even work and live on their own.
With tests to identify autism in younger and younger children being developed—and even the possibility of prenatal genetic testing for autism someday—getting information early on, and hopeful information (like the growing acceptance and understanding of Down Synrome) can indeed make a difference.
There are medical differences between the autistic population and the normal population that could be used for diagnosis. Fifteen to twenty years ago, Dr Rosemary Waring learned that autistics are statistical outliers in how long it takes for them to process tylenol through their systems. Medical research on autism is inadequate and misdirected.
Hopefully the information that would be provided, should the bill pass, would be the most up-to-date possible and accurate.
Wow, Ed I am somewhat relieved to hear that(not that the research is lacking but that it explains quite a bit about my son). My son takes forever to process medications. It takes several hours to lower a fever and when he had to be sedated for an MRI the nurse came back in at the prescribed time and asked “did I forget to give him the medication that makes him sleepy?”
@Leanne
I saw the effects when I took my son for an MRI. He was seven at the time. He had to be sedated to keep him still. Only when the time came for him to wake up, his eyes opened, but his mind did not. Hours later, I took him to the bathroom and standing in front of the toilet he completely missed and hit the wall above the toilet. It took eight hours after he woke up before his head was clear.
This is a problem for the medical community. It is the sulfur amino acid chemistry that is affected. The same chemistry that breaks down tylenol is the chemistry that latches onto mercury and transports it out through the liver and the kidneys. This means that irrespective of whether vaccines are linked to autism, autistic children should avoid any injesting of any heavy metals in any form. Once again, much of what medically is and has been measured cannot be part of medical research because it steps too close to that thin ice of associating autism and vaccines.
Off topic with the post, but to add to the comments…My daughter had to have an MRI last year and needed sedation as well. It took her four days after sedation to walk straight again or stand independently, speak clearly, stop laughing randomly, etc. – it was like she was a three year old drunk child for days. It was a little worrisome to see her affected for such a long amount of time.
As for the DS bill regarding information and resources, I really think it would be wonderful. However, doctors have to also be willing to change their tone when it comes to disability and the “perfect” child and who should and shouldn’t be given the right to live. Their gloom and doom messages about disability in general can be just terrifying. No bill will change the way doctors feel about it, but hopefully, over time, their attitudes will change and the resources and information the bill might allow for will give new parents HOPE and even JOY through the hope.