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another solution?

I’ve been thinking a lot lately about the fact that surgery for pyloric stenosis seems to be the most viable option for infants afflicted with this problem. Certainly, surgery saved my life. I weighed four pounds at the time of the operation; in fact, the doctors couldn’t wait for my mother to arrive the next morning in order to sign the consent. According to my mother, I was “failing” and the last-minute decision to operate was unavoidable. Not all babies though are in this dire situation when diagnosed with pyloric stenosis (ps).

Why then does surgery seem to be the most opted-for solution? Why aren’t preventive therapies available? Are non-surgical options available? (I know that, for a while, treatment with Atropine was an option.) Why is cutting into infants so acceptable? Why hasn’t research discovered the reason why so many babies are born with this condition so that we can prevent it? Are we doing everything we can to reduce the number of infant surgeries?

This topic requires more study on my part, I’ll admit. Having read some articles and discussed the topic at length with a ps friend (a friend who’s also had the surgery) who is an internet research devotee, I do know a bit. He compiled the possible causes of pyloric stenosis from several websites: “heredity; muscle and nerve abnormalities in the stomach region; increased production of the hormone gastrin, which increases cell growth in the stomach muscles; chromosomal abnormalities; maternal stress in the third trimester; non-breast feeding; swelling caused by allergies, leading to enlargement of stomach muscles around the pylorus [some studies have pointed to allergic reactions to the drug erythromycin]; elevated serum PG’s, reduced levels of pyloric nitric oxide synthase and infant hypergastrinemia have been found.” Some of these conditions seem preventable. Is the medical community doing its best to determine which allergies, for example, might cause this problem or reduce maternal stress that could lead to a baby’s ps diagnosis? Or does the medical field simply settle for surgery since it knows that the operation works in the sense that the physical problem is resolved? I wonder what type of current ps research is being conducted, if any, and in which cultures pyloric stenosis is an issue? Where is it not prevalent, and what are they doing differently?

I am hoping to discover a pediatric researcher who has devoted him or herself to finding a way other than surgery to cure non-acute pyloric stenosis. In lieu of this, I am hoping to inspire someone to take up this work. Surgery both saved my life and took away my life. Physically I was saved, but emotionally, spiritually, intellectually–in every other way–my life was compromised. The searing self-doubt, believing myself irrevocably broken, interrupted almost every act of daily life. In my manuscript, The Autobiography of a Sea Creature, I strive to illustrate this.

As an adult, I have healed from and am continuing to heal from the collateral damage, if you will, of infant surgery. But why put people through these types of challenges? Why not teach/take preventive measures? Why accept surgery on infants as young as three weeks old as the way to go when there could be alternatives? Why don’t we know more about the impact of the mother’s health on the baby’s? Why? Why? Why?

0 Responses to another solution?

  1. The writer and activist James Baldwin once said: Confrontation doesn’t always bring a solution to the problem, but until you confront the problem, there will be no solution.
    You have written with passion about what is a life-affecting challenge for a fair number of people. Who knows whether we can open up a way to give a better future to some of us whose lives were saved by infant surgery but who are still affected by it?
    Here are some of my observations about the situation that prompted your blog.
    We live in a world dominated by technological and economic concerns, and we all enjoy many of the benefits but also taste a few of the curses of this. In the case of infant pyloric stenosis (PS), surgery is without doubt the quickest and cheapest remedy.
    Many parents complain of patronising attitudes when they take their projectile vomiting and wasting baby to a doctor. It seems PS is often far from the medical mind and it often assumes new mothers are incompetent and panicky. Just look at the BabyCenter and Facebook pages on PS. By the time many smaller babies are diagnosed, it’s too late to try the medical option which needs at least 7 days to take effect.
    Atropine and Eumydrin (an earlier variant) have been used for many years to relax the pylorus muscle until the baby outgrows the condition. However, reading the Wikipedia entry on atropine underlines it may be a sledgehammer when used on a pyloric “olive”. Sometimes atropine causes side-effects, it can be overdosed, and it’s not always effective except in delaying surgery on an increasingly emaciated baby.
    Most doctors regard PS as a medical issue only and a temporary one easily fixed at that. I’m grateful there is increasing recognition of the long term parenting and self image problems you mention – but only among some. This may also explain the priority given to other areas of pediatric research.
    In nearly a century of the surgical management of PS, there are still many questions for which research results are contradictory, one being whether PS comes with a raised level of gastrin, a muscle building hormone. Our bodies and lives are very complex.
    PS is most common among Jews and Caucasians, and it is significant that in a study in Hawaii, where most races are present in good numbers, the statistics on its occurrence were identical to those gathered elsewhere. Which leaves diet as well as genetics as the variables – there would be a doctorate there for somebody?
    Minimal access or “keyhole” surgery for PS has been available for nearly two decades or so, and I am sad that a recent study showed it is used in less than half the surgeries. This technique takes more skill and experience than open surgery, so I guess the answer to this “why” is: When you’re a beggar you can’t be a chooser.
    A professionally medical response to your blog, both as comment and proposing a way forward, would be so welcome! My heartfelt thanks to you, Wendy, for raising and pressing your questions.

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