Building greater awareness

This Blog is for people troubled because of infant pyloric stenosis – their baby’s or their own.

Patient & doctor03.jpgFor many people, pyloric stenosis (“PS”) is something they’ve never heard of, even though all of us probably know several people who have had it.

Most people who have experienced PS (either as a parent or close family member, or personally) have been able to put what they often say was their “most traumatic experience ever” behind them.  I suspect and hope that these folk are a “silent majority”.

However, there are many (I believe quite a sizeable minority) who are or have been deeply troubled by PS, either as the parents of a PS baby, or as a “survivor”.

The web’s forum sites include the gratitude of many parents who found that their doctors and other medical staff did a wonderful job helping them as deeply upset parents through the PS and the surgery that probably followed.

But other forum “threads” (topics and discussions) testify to the outrage of countless thousands of other parents because of the unprofessional attitudes and ignorance of other medical staff.

Here are just some of the medical mantras that so often dismay or mislead –

“all babies spit up”
“typical first-time mother”
“just baby reflux – quite normal”
“come back in a week’s time if you’re still concerned”

“baby girls don’t get pyloric stenosis – it only occurs in boys”
“not a first-born baby boy – it can’t be PS”
“are you the expert – or am I the doctor?”

“A minor surgery”
“the scar will disappear in time”

“you’ll be taking a new baby home”
“the surgery has no long-term effects”

“babies neither feel nor remember pain… did you?”

Memory05Facebook, MedHelp and Patient are three of the busiest forum sites where PS matters are dealt with, and the single most expressed cry is: Build awareness of this conditions and its many possible ramifications.

This is what co-blogger Wendy has been doing since 2009, concentrating on the post-traumatic stress that has troubled her because of her PS surgery in 1952 and her parents’ unfortunate response to this, and explaining the various therapies she has found helpful.

I (Fred) have blogged since 2010, inviting readers to explore and learn with me about something that has captivated me for much of my life: the nature and possible effects of PS and its surgery.

Readers have added many valuable and informative Comments to the posts on both blogs.

These two rich PS resource blogs will continue to be available and be added to as time allows.

This new blog will build up an online book-like resource, making available and easily accessible a large amount of information and experience on PS and the issues around it as they affect especially survivors and parents.

Again, readers’ input and questions will be most welcome.

– Fred Vanderbom

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Author: whatwewishwedknown

Joint Bloggers - explaining, exploring and discussing issues around pyloric stenosis and other infant surgery, especially as done pre-1990 and much in need of far greater awareness today

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