Why this blog?

A few of the things I have been reflecting on during an otherwise busy week… consider this with me, please –

  1. writer-thumbDuring the past week several people have taken the time to add a Comment to several of my posts to this blogsite.  Some of those who find this blogsite clearly appreciate what they receive here: what I read consistently is: helpful and reassuring information, useful advice, careful writing, kind and balanced judgment.
  2. Some time ago I found an entry on my pet subject, infant pyloric stenosis (“PS”), on an information website, Answers.com.  Because I thought it fell somewhat short of what I would have liked to find and there was an invitation to edit it, I gave it some time.  Since then I have had a steady flow of “Like” messages from this site.
  3. Because I am writing weekly posts on many of the human issues (and some of the medical ones also) around infant surgery and especially PS, I am often surfing the web for new medical reports and personal experience stories.  In doing so I am struck by how often Google offers links to one of the posts on this blogsite.
  4. Recently somebody asked me, Why do you spend so much time and effort writing so much on this “pet topic”?  What expertise do you have to write publicly and offer advice on this subject?

All of the above is of course tremendously encouraging and affirming – but is it all true, and if substantially so, what’s the significance of that?  All of this made me decide to devote a post to this.

  • I had PS surgery at a very young age and have done battle with several deep-seated and mostly private emotional problems through much of my life of 67+ years: I was sure there was a connection but didn’t understand what it might be until I started using the web, which slowly but inexorably enabled me to connect the dots.
  • Another of the benefits of web access was that it enabled me to find and interact with others who had ahd PS or another infant surgery.  I found that whilst many (and probably most) of them claimed they had not had the “several deep-seated emotional problems” with which I had struggled, quite a number had, that these problems had much in common, and that they were as frustrated with their lot as I was.
  • blog-writing1On the web and in the book trade others and I began to discover a small number of professional people who had found and were advocating for the very clear possibility of a link between what can happen before, during or after infant surgery and the development of post-traumatic stress.  Their professional knowledge gave “body” to what we “traumatised survivors” had experienced.
  • The web also revealed to me that most of the medical world was oblivious or in denial about this link: in fact, much of the Western world believed that “babies don’t feel or remember pain” and that PS and infant surgery have no long-term after-effects.
  • From web-based forums (discussion sites) I quickly learnt that not only babies can be traumatised by infant illness, surgery and mother-infant separation.  Almost every parent describing their experience with a sick baby that involved surgery wrote that it was “the worst experience they ever had” and “more traumatic than giving birth”.  Again, reflecting on my own story and hearing those of others, I have recognized that parental trauma, although different, can contribute to the long-term effects of infant surgery on their child’s future emotional health.
  • Web-based forums also made clear to me that there are many, probably a silent majority of parents, who are very grateful for the care, support and healing they received from their doctor, paediatrician, hospital and surgeon.  Sadly however, the great majority of those who write in are scathing of one or more of these.  Ignorance of the symptoms, poor diagnostic work, an aloof, arrogant or condescending manner, dismissiveness of parents’ personal story, experience and careful research: these are the common complaints about the medical community, and they are repeated ad nauseam, unfortunately.
  • I think & blogFinally, I need to get a bit more personal.
    1)  I have been greatly helped towards healing by working on all the above.
    2)  I care about those who have experienced what I have but for whatever reason continue to struggle with poorly understood and unresolved questions and self-doubt.
    3)  I have the interest and time to devote myself to the reading and writing necessary to publicize what I have learnt in both mind and soul.
    4)  Years of training for and work with a wide range of people in a pastoral care context have dovetailed with other aspects of my upbringing, personality and Christian ethos to help me to contribute to the available body of information on PS and infant surgery issues for the benefit of people who have walked on a road the same as or parallel to mine.
    5)  I am often heartened by the response I get from others on these life journeys.
    6)  I have found that my reading, research and writing are personally interesting, clarifying and healing.
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3 thoughts on “Why this blog?

  1. Wendy

    Marvelous. Without your work on the web, I would not be as far along as I am in my healing from the post-traumatic stress induced by infant surgery. As I see it, one of the keys to your success IS the fact that you are not a medical professional. You are a highly intelligent, literate, informed, and compassionate researcher and writer about infant surgery and an EXPERT because you are a survivor of the very thing you write about. Often, professionals just can’t cross that bridge to relate to people, for they have not experienced the condition themselves. Your point of view is helping so many, and we rely on your posts and your continued dedication and passion on this subject. What a profound service you offer! Connecting with you has been one of the most important experiences in my life. Through you, I realized I was not alone. I was not a freak of nature. I am in community with a person who suffered as I did and who is a wonderful human being. I feel privileged to know you and to be in close connection. Thank you for all you do for survivors of infant surgery, their families, and for society in general.

    Reply
  2. Fred Vanderbom Post author

    Thank you so much, Wendy, for your heartfelt appreciation and commendation. I must say (and getting positive feedback about myself isn’t always easy!) that all you have written here with such care seems to be quite true.
    Again and again I come across parents’ tales of anger that their doctor or pediatrician simply botched the diagnosis of their baby’s PS, the most common condition that (whether rightly or unnecessarily) results in infant surgery. I’m fairly sure there is a “silent majority” of PS cases that were competently and sensitively handled, but there remains the overpowering link between PS and surgery which is uncalled for. If more doctors had a personal experience of this surgery, whether as a patient or parent, all this would be very different.
    You and other readers here will also be interested that my contributions to forum websites like Answers, Facebook, Topix, MedHelp and PatientUK are yielding a lot of interaction and adding to public awareness of the issues which motivate you and me here on the web.

    Reply

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