I was first introduced to Ruth Levy Guyer's work when I read her book, Baby at Risk: The Uncertain Legacies of Medical Miracles for Babies, Families, and Society.
http://www.amazon.com/Baby-Risk-Uncertain-Legacies-Miracles/dp/1933102268/sr=8-1/qid=1170879288/ref=sr_1_1/104-6340677-2245540?ie=UTF8&s=books
You can read my blog post about the book here.
She is also a regular on NPR's "All Things Considered".
Her recently published piece for www.scienceprogress.org is a must read. Her words echo what most of us have discussed here with regards to accurate reporting.
A big thank you to Helen Harrison for sending the link to the group.
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8 comments:
I think it is important to say that Ruth has confronted the media, who make preemiedom "pie-in-the-sky". We have been complaining here and elsewhere that the media does a disservice in making preemies into cute miniatures, who will soon be just like any other kid--no worries. Ruth asks the media to act responsibly, to report ALL the facts and findings, and to not selectively leave things out. She asks them to follow up. She asks them (both the scientists and the journalists) to follow their professional code of honesty, thoroughness, follow-up, objective reporting, etc.
The truth about post-preemie lifestyle will come out then. It won't be so cute nor glamorous. Not so feel-good--more balanced.
C & V
I love what Ruth had to say, and hope it will help encourage journalists to give the whole story.
To change the subject slightly, there are a bunch of other articles I'd like to alert people to.
In the Nov. 19 issue of The New Yorker, there is an article entitled "Small and Thin: The controversy over the fetal origins of adult health" by Stephen Hall.
It is an article about Dr. Barker and the "Barker hypothesis" on low birth weight as a cause of adult cardiovascular disease, diabetes, hypertension, etc.
Then the Nov. 8 New England Journal of Medicine has some studies/articles that may be of interest.
There is a review article on BPD that mostly says we don't know what the adult outcomes of BPD are yet, but everyone is worried about COPD(chronic obstructive pulmonary disease).
[Chronic Lung Disease after Premature Birth
E. Baraldi and M. Filippone]
On the positive side, there is a study on caffeine (used to prevent apnea in preemies). It looks like caffeine decreases severe handicap in preemies while increasing survival!
[Long-Term Effects of Caffeine Therapy for Apnea of Prematurity
B. Schmidt et al.]
The study involves only very short-term outcomes (18 to 22 months) but it is looking good.
In a *possibly* related development in adult medicine, it has been found that the equivalent of an Irish Coffee (caffeine and alcohol) blocks the harmful effects of glutamate released by brain cells following a stroke. In doing so, this cocktail may limit the destructive cascade of chemicals that follows the brain cell loss from the initial impact of the stroke, thus limiting brain damage. (Science News,"Brain Attack," July 14, 2007)
Will MDs soon be telling us to drink an Irish coffee and call the paramedics after a suspected stroke, the same way they now tell us to take an aspirin and call the paramedics if we think we've had a heart attack?
Does Irish Coffee have a place in preemie brain care?
Too soon to say, but an interesting possibility.
Hey guys -- My son is going to the neurologist today so everyone keep your fingers crossed that he comes out OK... He's got some unexplained shaking and stuff that could be nothing. Or it could be something. You know the worries...
Andrea
I'm sorry but I had to laugh at the idea that our preemies might be getting an irish cocktail in their IV"s some day soon. Hey, if it calms them but keeps them breathing and makes the NICU more bearable, why not??
As for Ruth's work---it is excellent and it should be essential reading for a parent of a child in the NICU as well as all medical students who wind up in a NICU on rotation or as fellows.
Helen,
Thanks for all of the great reading suggestions. I am going to try to search them out, to find a link that people can click on. But, if you have one, can you please email it to me.
Thanks.
Stacy
Andrea,
We dealt with a lot of this with Paige. So, please feel free to contact me if you have questions. Send us an update and let us know what you find out.
Hang in there!
Stacy
Ruth's book is fabulous! I've purchased 3, and donated 2 - one to my nursing school library, one to my local library.
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