Networking about infant pyloric stenosis (1): links

For those who have had surgery for infant pyloric stenosis (“PS”) the online social media and discussion forums have been a Godsend.

Being a 1945 PS baby, for most of my life I was able to compare notes with only a very few others who share my PS-related joys and sorrows.  But worldwide networking has arrived and flourished since the advent of the internet in the 1990s.

Parents now compare notes on their baby’s PS, the surgery, and what followed.  Many regard it as the most traumatic experience they’ve ever had, too often made worse by the lack of awareness, sloppy diagnostic work, and even arrogance of their doctor.  Many tell their tale or join a Facebook Group hoping to increase the general awareness of PS, the most common condition of infancy which is usually dealt with surgically.

blog-writing1Survivors are typically keen to break out of their sense of aloneness.  We can now compare our feelings over the surgery and scar: we had no say and have no memory of our first crisis, but we can now meet others with the gnarly or deeply sunken scar which most of us hated, especially in our earlier years.

Many PS survivors also want to learn about a list of ongoing problems which some have and which seem to be related to their stomach operation, although doctors don’t agree or want to know about this.  After all, the paediatrician and the surgeon assured our parents that the operation was easy, quick, almost always immediately successful, and that there are no long-term problems after PS and the surgery.  “If only!”

Facebook is the most accessible and popular address and has at least six large and small PS Groups and they are actively used by both parents and PSers.  Unlike web forum sites, Facebook Groups can only be accessed by registered users; they just need to type “pyloric stenosis” into the Search box to get a list of Groups.

Forum sites like Experience Project, MedHelp, Patient UK, and Topix each have one or more discussion groups for PSers.  These four links are to each site’s most popular discussion on PS matters, and a search there will usually give you links to other discussions on that site.

Expectant and recent mothers share their experiences, concerns and questions on specialist sites including BabyCenter (in the USA), BabyCentre (in the UK), and also in other countries.

Readers interested in any of the PS-related issues are to be encouraged to “visit” some of these online locations.  Consider sharing your story and help increase the public and medical world’s rather too common ignorance of PS!

In the next few posts I want to pass on some samples of the important information that is shared on the pages of some of Facebook’s PS Groups.

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5 thoughts on “Networking about infant pyloric stenosis (1): links

  1. Wendy

    Wonderful resources. As I was reading the names of the different sites parents can go to, I was thinking of my mother. If only she had had access to the Internet while she was going through this crisis with my pyloric stenosis surgery in 1952. As it was, she was VERY isolated. My brother, three years older, was also very sick when born and when four years old. My mother lost two almost-term babies ten years before my brother was born, so you can imagine her absolute terror dealing with both her babies’ illnesses. Talking to other parents on the Internet would have provided her such relief! I’m thankful for social media and for this blog that is helping so many. May bonds continue to be made and information shared.

    Reply
    1. Fred Vanderbom Post author

      Wendy, these poignant bits of your story underline what your and my parents went through with the pyloric stenosis we each had so early and long ago. Your mother’s story is quite different from that of my parents, but the stress each was under may well have triggered the condition. The resources we can find and share via the internet are certainly wonderful. Sadly, because most people have never heard of PS, those suddenly affected by it are usually totally ignorant and unprepared. And they are too often guided by medical people who seem to be just as ignorant – and insensitive. One of the aims of this blog is to spread PS awareness as widely as I can. Thanks for another “thumbs up”!

      Reply
  2. Wendy

    Yes, how I wish that PS was something everyone knows about, like diabetes. I think 5 in a thousand infants is a high enough percentage that everyone should be educated about it, especially new mothers and fathers. Obstetricians should educate the parents about this condition. It would be the responsible thing to do! What reason could there be that parents are not educated about PS? It’s dumb, absolutely dumb, and unacceptable. Thanks for all the educating that you are doing, even if much of it is after the fact.

    Reply
  3. Fred Vanderbom Post author

    I fully agree, Wendy! The ignorance and attitude of so many doctors is completely inexcusable. Yes, there is a lot that diagnosticians have to keep in mind. But how many life-threatening conditions of early infancy are more common than pyloric stenosis? It seems the medical education establishment is largely responsible both for the poor training and the all-too-common “attitude” problem. I’m told the latter is being addressed… only time will really tell.
    And as for the former, it’s cheap isn’t it to brush off deeply troubled parents who are ps experienced and/or well-read as “over-anxious and inexperienced mothers”.

    Reply

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