Past Pylorix Pages – Pyloric Stenosis treatment in the 1970s (1)

As someone who has been affected by infant pyloric stenosis (PS) and has remained interested in this condition, I have been fascinated by what the publicly available medical literature of the 1970s contributes to my knowledge and understanding of PS.

My overview of this material draws on no less than 21 reports, and I’ll have to devote two posts to the information I have found.  Time keeps me from providing links to all these articles, but interested readers are invited to contact me about these.

As in the 1950s and 1960s, it is clear that during the 1970s the spotlight of the medical journals continued to move from merely describing PS to statistical and other research work to better understand this mysterious malady.

What have I found the most significant features and findings of the medical world’s work on PS during the 1970s?

It seems that work mushroomed on the causes of infant pyloric stenosis and the profile of its sufferers: half the reports belong to this area.  Their subjects covered just some of the still many unknowns of PS, but they nevertheless make an impressive list.

General studies
A large study of PS cases in three large Belfast hospitals in Northern Ireland was based on 521 cases over 13 years (1957-69).  It found a bias towards higher social classes (notably the children of doctors and police), breast feeding, being first-born and being winter-born.  It found that the mother’s age was not a factor.  The size of the pyloric tumour was usually found to be related to the size of the patient, rather than to age or the duration of PS symptoms.  The babies’ subsequent growth and development were in the anticipated range.  PS infants had a higher incidence of other disorders, but without any clear link with particular conditions (except hiatus hernia, a malformation of the oesophagus) or their severity.  The babies also had various hernias more often, likely as a result of vomiting, the surgery or more crying in a weakened state.

Genetics and heredity
Three of the articles dealt with what we can learn from the fact that PS runs in some families.  Several studies of twins have shown that identical twins both have PS quite often but fraternal twins no more commonly than siblings.  This shows that in families, heredity plays a much larger role than environment, contrary to the suggestion that it’s a family’s food, surroundings and lifestyle that causes PS to cluster in some family trees.
A brief report concerned triplets born in 1973 all having PS, confirmed at surgery.
A telling 1979 report concerned a man who had been operated on for PS having three sons with the same condition.  A genealogical table of his family showed that both his parents had relatives with PS, but that none of his wife’s relatives had it.  So it was suggested that the man’s parents carried genes predisposing to PS and transmitted these to him in such quantity that he and all his children acquired the condition.
This led the writer to conjecture that there are a number of different genes which may all predispose one to PS, and that it is necessary for a certain number of these genes to code for the condition to develop.  It further seems that the female makeup is protected to some degree so that a greater genetic load is required for girls to acquire PS.  This greater genetic load would also explain why the children of female patients are more likely to develop PS rather than those of male patients.

Ethnicity and PS
A number of studies dealt with the fact that among ethnic groups, Caucasians have the greatest incidence of PS.
A 1974 letter from a doctor in Barbados made several observations –
1) Several British and European countries had reported a falling incidence of PS, from around 4 to 2 per 1,000 live births.
2) At the same time the trend was upwards in other countries such as the West Indies.
3) A study in Hawaii confirmed the relatively high incidence of PS among Caucasians whilst recording no cases among the State’s 11,274 Chinese infants born in a given period.  The authors of this report claimed that cultural differences were of minor importance in Hawaii, that medical facilities were shared, and that their findings reflected variations in susceptibility which were determined by race.

A Singapore Medical Journal article in 1976 also dealt with this subject.  With no studies of PS incidence published from comparable Asian countries, and with Singapore being a truly multi-cultural State, it was an ideal location for a study on the ethnicity of PS incidence.  A review of 141,215 live births in Singapore during the three years 1972-74 showed the Chinese as having 21.2 PS babies per 100,000, the Indian population 35, and the Malays 9.7.  The comparable figure among Caucasians would be between 200 and 400!

Heredity vs environment
Two studies dealt with the relationship between mothers and their PS-troubled babies.  A 1974 article found that on the basis of 526 patients not only do very few PS babies have A and AB blood, but that their mothers have it even less often, suggesting another possible factor in the pre-natal environment increasing the possibility of developing PS.  The report mentioned that experimental work in dogs had succeeded in reproducing PS in pups born to mothers who were treated with pentagastrin during pregnancy.  This animal model may be relevant to the disorder in humans and indicates a mechanism by which a mother can affect her child before its birth.
A 1976 medical genetics journal also studied the mother-fetal interaction for gastrin production and sensitivity, whilst several other studies make it clear that the link between maternal gastrin and infant PS is far from established.  The article states however, that only 37% of PS cases having a clear genetic factor, and yet this is the only clear guidance that can be given to parents who seek genetic counselling.  We must continue the search for environmental factors to account for the other risk factors and cases.
Another report on the blood group distribution of 486 patients also noted the excess of O and B blood groups among PS sufferers, and on the basis of blood bio-chemistry it suggested a possible association between the development of PS and the efficiency of fat absorption in the infant.

Mothers and prenatal stress
100 mothers of infants who had had PS surgery in the Cardiff region of South Wales were studied for a 1978 report.  It found that these mothers were normal people: the personality dimensions of neuroticism and extroversion as measured by the Eysenck Personality Inventory showed no significant differences between the subjects and the norm.  The situation which can give rise to the birth of a PS baby is therefore not one of neurotic individuals over-reacting to everyday events, but of normal people reacting to particularly stressful events.  During the interview the subject mothers were found to be significantly more anxious than the average.  The researchers conclude that normal mothers who have been subjected to an increased number of particularly stressful events during pregnancy have an increased risk of giving birth to a child with hypertrophic pyloric stenosis.  I have mentioned in another post that I believe my PS was related to the stress factors my mother suffered in 1945.

Long-term effects
Several studies on the follow-up of PS surgery and its long-term effects were published in the 1970s.
The November 1971 Scandinavian Journal of Gastroenterology reported a follow-up survey of 14 PS patients 21 – 27 years after their surgery.  It found that minor stomach discomfort was common and two had somewhat more severe symptoms.  Acid secretions were generally also higher than average but still within the bounds of normal.  Barium meal studies showed no gastric, pyloric or duodenal abnormality, but two suffered from gastric retention, the delayed emptying of the stomach and probably linked with the pylorus’ functioning.  However, none of the 14 reported “dumping”, a term that describes a group of uncomfortable or painful but poorly understood symptoms that affects many patients after gastric surgery including the pylorus.
Another Scandinavian study, this one from Sweden, was based on follow-up interviews conducted in 1970 with 195 PS boys in relation to their military service; all had been medically treated (as happened more commonly in Europe) at the Children’s Hospital in Gothenburg between 1922 and 1942.  This study was covered in two separate reports; it found that morbidity (the incidence of illness, disease and death) was no higher among PS sufferers than the general population; in fact the incidence of peptic ulcer at age 50 was less than half the norm.  But especially when PS came with severe malnutrition it seemed to affect negatively adult height and weight, as well as performance in intelligence and adaptability tests, and in men their general fertility and the siring of girls.
However, an Israeli study of 228 infants were operated on for PS between 1946 and 1977 at the Tel-Aviv Municipal Medical Center was even more concerning.  41 of these patients aged from 15 to 30 years were evaluated for morbidity (the incidence of illness, disease and death) in the area of gastrointestinal diseases and their possible link with the operation.  24 of the 41 patients had gastrointestinal symptoms, including dyspepsia, diarrhea, constipation, and abdominal pains.  X-ray examination of the stomach was performed on 31 patients, in order to examine the structure and function of the stomach.  Five patients showed clear signs of ulcer disease, four in the duodenum and one in the stomach.  Another five patients showed mild deformation of the duodenal bulb (the pyloric end of the duodenum) and two showed signs of gastritis (inflammation of the stomach lining).  No correlation was found between the severity of the congenital PS and the presence of later illness or disturbances.
The fifth report on the long-term effects of PS is one I have mentioned in another post, a study that has been circulated quite widely on the effect of PS starvation on learning.  A number of specific learning abilities together with the general adjustment of 50 subjects aged 5 to 14 who had had PS were studied and compared to those of 44 siblings and 50 matched controls.  Starvation resulting in a reduction of more than 10% of the expected body weight in infancy is quite common in PS cases, and was associated with poorer learning abilities, especially those involving short-term memory and attention.

On a more positive note, a project reported in a 1975 Pediatrics journal found that PS and its surgery do not increase the incidence of allergies and asthma.

Vomiting after PS surgery

Many parents are affected by their baby’s continued vomiting after PS surgery, but this is hopefully mild and passing, the result of bruising from the handling of the baby’s stomach.  However, a British report published in 1979 dealt with a more serious possible cause.  The study found that of 72 PS infants who had surgery at a Sheffield hospital, 36% “experienced moderate to severe postoperative vomiting of sufficient intensity to cause the postoperative feeding regimen to be modified or interrupted.”  Two factors were found to be significant: significant damage to the lining of the oesophagus was found in 30% of patients, and others had vomited blood before surgery, caused by damaged oesophagus.  Babies with these problems had a prolonged stay in hospital.  It was recommended that doctors check the oesophagus of PS babies before surgery to anticipate and treat this damage.

Two observations to end with…

  1. The results of research will often depend to some or a large extent on the aims, parameters and methodology of the project.  Several reported finding mentioned here are disputed by other reports I have read, for example the likelihood of the mother’s gastrin secretion affecting her baby before birth, and the relationship between breast feeding and PS.
  2. It is clear that the causes and effects of infant pyloric stenosis are complex, and despite much research work having been done over more than a century, many of them are still unknown or just partially understood.  Yet I have found the available reports give me a much better “feel” and some understanding of quite some of the whys and wherefores I have about my own PS story.

Next blog – some more interesting material about infant pyloric stenosis from the 1970s.

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8 thoughts on “Past Pylorix Pages – Pyloric Stenosis treatment in the 1970s (1)

  1. Wendy

    Thank you for this detailed history and analysis. Isn’t it amazing that the cause of pyloric stenosis has not yet been determined? After all these studies that you’ve reported on, it seems the medical community is not really even close in determining the condition’s origin. In your post, you state that you have “a much better ‘feel’ and some understanding of quite some of the whys and wherefores . . . about [your] own PS story.” I would love to read a future post, once you are done with this wonderful series of articles about the history of the treatment of ps (and if you are so inclined) about your reflections on your own ps journey. I know you’ve been commenting on this all along, but I’d love to see your thoughts on this all in one place. Also, the writing of such a piece might lead you to more insights that you can then share with us. 🙂

    Reply
  2. Fred Vanderbom Post author

    Thanks for the encouragement, and yes, I plan to do that, and yes, after I’ve had time to collect my thoughts. Every set of articles I (re)read adds new twists to the whole subject, and I’ve certainly grown in my awareness of how complex it is. For a start, I’ve had to abandon any idea that I’ll ever get more than a very basic grasp of the biochemistry, genetics and anatomy aspects of this subject. Not surprisingly, I have the best grasp of the relational part of being a doctor, and this is where sadly I seem to be on a different page from many who have to work with the parents of sick babies.

    Reply
  3. Jeannette Rijks

    Dear Fred,
    Like you I am no medical professional. I have however learned eagerly about loneliness, schooling myself like you, mostly through the internet, making me an expert in this field. Over the years I found that a considerable number of people that consulted me have suffered from some kind of trauma in early childhood. I never knew about the fact that infant surgery used to be carried out without anaesthesia until I read your blog. The impact of this knowledge has still not really sunken in. It will make a change in how I can help people.
    So, there is another twist for you. Loneliness.

    I now suspect I understand why loneliness has been my ‘project’ and why I have been so almost fanatical about it. At the age of 13 months I underwent major surgery of a kind that was at the time rather experimental. I cannot remember a day in my life that I have felt relaxed. I have a life long record of stress related problems. It feels like it all makes sense now.

    Thank you for being there.

    Reply
  4. Fred Vanderbom Post author

    Dear Jeannette,
    Thank you so much for this poignant Comment, which certainly does add yet another twist to my explorations and discoveries. Feeling deep loneliness and an insatiable hunger to find “just someone” (in fact I’ve found several) with whom I can share and explore … this is part of every feeling person, but with people like you and me it surely has an added dimension … The development of the internet has certainly been a tremendous help in satisfying something of this craving.
    I find it revealing that like me you know you are a bit “fanatical” about your project! While my wife sometimes thinks I am a bit “loopy” I am glad she tries to understand and accept that this is part of my story.
    Have you “visited” the “MyIncision”, blogs of Wendy Williams? If not, I strongly recommend you do that! She brings more sensitivity, intuitiveness and creativity to this subject than I can, has done some public speaking and advocacy, and has also had therapy and gone to workshops.
    Please feel free to keep in touch about this subject. Do you have a website or blog about it?

    Reply
  5. Lisa Puckett

    Dear Fred,

    I have an 11 year old who had PS. I also have an 11 year old nephew (born the same day as my daughter, same hospital, same Doctor) who had PS. They had surgery a week apart (my nephew had his surgery first). My nephew came out of surgery fine. He has had no lasting effects from his surgery; my daughter however has not had it so well. She has constant stomach pain, she gets blocked up a lot as well. Her doctor informed me it is because her PS was not caught as early as it should have been. I had to take her to 5 hospitals before someone even listened to me about checking her for PS. They had to cut the muscle open too large. Have you read about this happening to anyone else? I would like to find someone who is also dealing with the pain that PS surgery CAN cause.

    Thank you,

    Lisa

    Reply
    1. Fred Vanderbom Post author

      Dear Lisa,
      Thanks so much for raising your daughter’s troubled story here; it tells me you have been very frustrated by the lack of thorough care she and you have received for so long. Your questions also cautions me, as I’m not a trained doctor and I can’t really question you or your young girl (let alone run tests!) but from my reading over many years I can make these comments –
      1) Those who have had PS surgery each have our own and often very different stories: these underline that there are so many variables, both at the surgery end (even the same doctor cannot do each job exactly the same way) and how bodies and minds react.
      2) I have never ever read that late diagnosis has any link with the pain trouble you describe, and from my reading I cannot imagine what such a connection might be; it might be interesting to ask this doctor (that’s if you’re game)!
      3) PS surgery is very standard; you wrote “They had to cut the muscle open to large”; this is exactly what PS surgery is all about, but it’s an exacting job: too little cutting of the muscle and the muscle fails to relax and the surgery has to be done again; cut just a bit too deep or too far and damage is done to the pyloric passage lining or the next part of the gastric passage, each of which has to be recognised and repaired quickly.
      4) From what you describe and I’ve read, it seems most likely to me that your daughter’s pain are from adhesions – search the tags of my several posts for more about adhesions, and/or google for it. Another less likely problem could be another more complicated problem of your girl’s abdomen or gastric passage; I pray that’s not so, but your doctor could be asked to run tests to eliminate this. It may be best to ask your doctor to refer you to a GI (gastro-intestinal) specialist, preferably one who work with children.
      I really hope these general comments help you, Lisa. My thoughts, prayers and best wishes are for you and your daughter: persevere, encourage your girl with words and determination, and ask your doctor or family or friends, esp. any who have medical knowledge, to recommend a suitable specialist.

      Reply
    2. Rachel W

      Lisa,

      I had surgery for PS when I was 3 weeks old and without anesthesia. I am female and now 42 years old. I’ve had life-long gastrointestinal issues that never seemed to have an answer – pain, bloating, difficulty with regularity. As an adult, I wound up with vaginal cervical stenosis. It never once occurred to me that any of it was PS related until I read your post. It sure makes me wonder.

      I also never considered ptsd as a result of the surgery. Although, I’ve always had an intense fear of being held down as well as being cut with a knife. When I learned my surgery was without anesthesia, it made perfect sense. We may not have recall from such an early age, but learning still occurs.

      My daughter had surgery at just 10 weeks old for a conjoined kidney; she did have anesthesia – hooray for medical advancement. This does make me wonder about the long term impact for her.

      Good luck with your daughter. It might be helpful to seek a homeopathic remedy,

      Best wishes,
      Rachel

      Reply
  6. Fred Vanderbom

    Hi Rachel,
    Many thanks for your Comments which I’m sure will help Lisa and her daughter as well as others reading this discussion.
    Some years ago I interacted by email with someone who had had a PS operation and also had vaginal stenosis. I privately doubted her belief that there was no connection, but being a male and on the internet I didn’t take that further, and in many years of reading I have not come across any suggestion of a link.
    However, as my friend Mark commented on my April 12 post, he and I both found that a number of the challenges we each had clearly led to our PS episode. In your case, unless you can identify specific scary experiences, I’d be most surprised if the fears you mention were not linked with your body’s memory of your surgery.
    As I have posted and Mark has commented, I do believe that there are many factors (besides surgical trauma) that determine whether we have long-term trauma-type effects from infant surgery. And I’m sure you will do what you can to help prevent your daughter having such difficulties, starting with your common experience. My mother had a serious life-affecting accident in her early childhood but she never told me herself, let alone linking her pain with mine.
    It helps greatly that today we can be so much better aware of many of the hazards of child development.
    Best wishes!

    Reply

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