The hushed-up alternative to surgery for pyloric stenosis

Knowing myself and being open and honest about myself is very important to me, and to many others I know.  But sadly, some of my relations and friends are characterized by struggle and failure in this area.  And I never stop being surprised that IQ and education have nothing to do with how well somebody know themselves.

Know thyself1The same is true of the medical profession (and yes, the clergy).  I’d like to think that people who choose to work with and serve other people would be characterized by people skills including self-awareness. But no!

So we have excellent doctors, nurses, pastors and teachers – and those we quickly sense should be doing something else.

These thoughts were recently (30 October 2013) prompted by an article taken up by a local American online newsletter, the Spencer Daily dot com.  Under the title, Local Woman and Child featured in CAMC Article, the article encourages parents who are going through a rough time with a pyloric stenosis (PS) baby to consider the CAMC, the Charleston Area Medical Center.  The article is in fact a promotion for one of their pediatric surgeons, but it is nevertheless honest-to-life, perceptive and helpful.

Why did I like it?

1                    The article recognizes that so many parents with a PS baby are first surprised, and then progressively frustrated, angered, even outraged by the treatment they get from their medical doctor.  I have often posted about this (check the “Categories” at the upper right of this page).
The article sets out step by step the sorry tale too many parents experience – until finally their baby is seriously underweight, malnourished, dehydrated, and often it seems near death.
Only then does somebody think, “PS maybe?”, order some tests, and arrange for something effective to be done.

2                    The article acknowledges that it is far from unusual for parents to work out from the internet that their infant’s life-destroying condition may well be PS, well before their doctor does.  While this is understandable it is surely not the way a serious and fairly common infant condition should be diagnosed.  “He had every symptom – it just had to be it,” the mother said in exasperation.

3                    This doctor recognizes what a traumatic and unnecessary experience all this is for the parents of a newborn baby.

4                    Some of the complexities of operating on a tiny baby are well if very briefly explained.

5                    The doctor’s obvious love and care for babies and his dedication to his work are clear and to be commended.

There were also some things I did not like.

Surgeon011                    As so much on-line and face-to-face medical information does, the article promotes surgery as the only available answer to PS and links this with the excellent training the surgeon concerned had had in laparoscopic procedures on infants with this condition.  It rightly points out the benefits of a laparoscopic pyloromyotomy over the traditional open surgery procedure.  And whilst we can understand that surgeons would advocate surgery, why is the medical alternative so rarely even mentioned, let alone explained and offered?
Whilst the web gives us many stories from parents who are grateful for the immediate and often remarkable recoveries after PS surgery, there seem to me to be at least as many stories from parents and ex-patients who are struggling with the long-term effects of this infant surgery.  This unwanted, all-too-frequent and usually hushed up subject of complications would be largely cancelled by medical treatment.
The risks and long-term effects of treating PS medically with the drug Ranitidine are minimal, although the treatment takes longer than an hour in the OR!

2                    This doctor states that the scarring from a laparoscopic pyloromyotomy is minimal: “His [three] scars are smaller than one of his fingernails,” he stated.
What is not mentioned is that a baby’s fingernail grows many times larger during its next 20 years, as will the three scars.  Having three sunken adult fingernail-sized and usually deeply sunken scars is not “minimal” in the eyes of at least some people.  I have seen them.  As somebody observed, “It’s as if my belly has been hit by shrapnel!”

These are I believe sobering facts to consider before deciding to submit a baby to what is usually unnecessary surgery and why marking a baby for life should be avoided when it is not necessary to save its life.

This site includes many posts on everything a parent needs to know and realize before agreeing to PS surgery.  Just go the “Categories” box and you’ll find the information in a way that is easy-to-follow.

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4 thoughts on “The hushed-up alternative to surgery for pyloric stenosis

  1. 藍光

    Hi there, I noticed your new post named “The hushed-up alternative to surgery for pyloric stenosis | Stories from the Survivors of early Surgery”. Your story-telling style is bravo, keep up the good work!

    Reply
  2. Wendy

    The pictures in your post are priceless – so funny! Thank you for sharing the article and your post. Incredible that in this day and age, pyloric stenosis is not a household term for pediatricians and that doctors would send this poor mother home again and again telling her the utter baloney and hogwash that her baby might be allergic to her own breast milk and to formula. Bah! Projectile vomiting is projectile vomiting. So not much has changed since 1952? My mother was given the same hogwash types of advice – ‘oh, you must be breastfeeding her incorrectly.’ So my mother, in the days of NO Internet, btw, finds an article in Dr. Spock’s book about pyloric stenosis and says to herself, “That’s it. That’s what she has!” But she didn’t call 911. She sat stewing because that’s what women did in 1952. She caved in to authority. Luckily, my brother’s pediatrician looked in on me starving in my crib and told my mother to bring me to the hospital immediately!
    If the doctors had diagnosed me earlier, I would have been a great candidate for Ranitidine. How I wish they’d tried that. While I have had no physical problems since the surgery, thankfully, I have had PTSD for 60 years! (The 1950s in America were the days of NO anesthesia for infants who needed surgery). Figured out I had PTSD 10 years ago. I’m getting better at recognizing my triggers and being more calm in my life, but how I wish I had had an alternative to surgery.

    Reply
  3. Fred Vanderbom Post author

    Yes Wendy, I find it amazing too that so many doctors overlook pyloric stenosis when they see a baby with the textbook set of symptoms. Agreed, most people are not familiar with these, but I’ve read that in medical school PS is one of the “common conditions” that is covered in the general medicine course.
    I too was educated about PS by Dr Spock! His book was next to the Bible in many homes in the 1950s and ’60s. What also keeps frustrating so many parents and PS survivors is the dismissive attitude many medical doctors have to their suggestions and to what we mere mortals know or have learnt. Yes, I know doctors have to follow the rigours of the scientific method, but surely commonsense also plays a role?

    Reply

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