Category Archives: Effects of starvation

Pyloric stenosis – untangling the emotional baggage

Another happy birthday and another poignant anniversary of my first and very early brush with death have just passed, and this cast me into a reflective mood.  This was focussed by some delightful time I recently spent with family members.

1940s surgery looked and was different from today's

1940s surgery looked and was different from today’s

As my previous post has recounted, I had pyloric stenosis (or “PS”, a blocked stomach) soon after my birth and escaped death by starvation by having an operation when I was only 10 days old.  I’m sure the trauma affected my mother, and this in turn affected me, added to by the crude way infant surgery was often done until the 1990s, plus the maternal deprivation that was part of 1940s hospital routines and infection control.

If you have had PS and are troubled by ongoing issues you suspect or know are related, you may want to reflect along with me!  A little background will help …

Only in the 1950s did some doctors begin to specialise in pediatric (infant and child) surgery, and only much later still did this and advances in medical technology see the development of anesthetics, anesthetic management and surgical techniques that are safe for infants in their tenderest first two years.  I have posted that Dr J Everett Koop in the USA was an early pioneer in this.

Only in the late 1980s did a few brave people in the U.S. medical community dare to address the commonly believed mantra that “babies don’t feel or remember pain”.  Among them, Drs K J S Anand and P R Hickey explored the facts and then available information and challenged the established beliefs and practices.  The late Dr David Chamberlain wrote articles and books about the infant mind and memory.  And the late Dr Louis Tinnin amongst others developed therapies to help survivors of crude early surgery to recognise, manage and overcome the post-traumatic stress that could result.

In recent years I have been able to connect online with many who have been affected by old-style infant surgery like I was, and I honour and thank those researchers and doctors who have done so much to give us the present safe and usually fairly damage-free ways of treating infants who need early surgery.

Thanks to the work of the above people (and others like them) I can now understand the mysterious, unsettling, embarrassing and scary inner struggles with which I’ve had to live for most of my nearly 70 years.  Only in the last ten years has the light and help given by these heroes and spread via the internet been moving me towards healing and inner emotional peace.

Here are some of the “issues” with which I struggled –

  • People02All my life I have had an overpowering and insatiable obsession with the 10 x 3 cm scar-web on my belly and the operation it represents. I recently posted about this obsession which has troubled me in a list of ways, some private and worrying, some quite public and embarrassing.
  • For the first 20 years I was afraid of hospitals and all my life I have had passive-aggressive problems with medical people and to some extent with anyone in authority.
  • Since the dawning of my self-consciousness I have had a deep “need to know”, to understand in some detail what this strange thing on my belly was and what exactly happened to put it there. When my parents fobbed me off I went to books, libraries and bookshops, and much later there was the internet.
  • I was often upset by visitors’ curiosity about my scar, my parents’ stonewalling whenever I asked them about it and my PS story – while I overheard them talking with visitors about this page in my life!
  • Certain words and seeing certain things were triggers that made my heart jump, made me blush, and funnelled my thinking to that first medical problem and procedure I had. I have posted about some of my triggers recently.
  • Digestion problems seemed to affect me more often than others in my family.
  • It became clear to me that my mind wasn’t as good as my 4 siblings’ was, that I was less well coordinated and confident than they are, and that I was regarded by my parents and others as rather sensitive and easily put on the defensive.

Most of these frustrations were obviously linked with my first illness and surgery, and I came to suspect the last two might well be too, as I found medical reports that linked PS and its surgery (pyloromyotomy) with them.  Very early starvation damages the baby’s developing brain, including intelligence and motor coordination, and PS survivors and their parents frequently report any of quite a list of abdominal complaints, including vomiting, irritable bowels and reflux, confusion over hunger or feeling full, and discomfort to severe pain often suspected as being caused by adhesions that had developed within from the scar.

Many of my posts on this blogsite discuss these matters.  Interested readers can find them by using the “Categories” search box at the upper right of this page.

How did “family time” get me thinking?

  • During a recent reunion I enjoyed with my four siblings, we discussed our gastro-intestinal behaviour – among many other things of course, but yes, we did! We found we had remarkably similar problems with diet, GI problems and necessary food cautions.
    This does not take away my gastric challenges but puts them in a wider context: it is well-known that PS is caused by high gastric acidity and quite often both these have a hereditary element, affecting more than one baby in a family.
    So my mild gastric problems caused my PS and it seems are not its result, nor that of the surgery.
  • I continue to feel confirmed in my observation that compared with what I see of my family’s gene pool, I have reason to believe that my very early days of starvation seem to have somewhat affected my brain development. However, I also recognise that PS survivors are represented on the full range of the emotional, mental and physical spectra!
  • Especially two of my grandchildren have come to remind me very much of some of my own emotional architecture. While happy to do things in public they hate with a passion situations where they feel “exposed”: having their named called out in a school assembly, being asked to pose for a photo.  They are emotionally sensitive, and clearly “people people” but can also be so focussed (or obsessed?) that we wonder if they are at the low end of the autism spectrum.
    Seeing these kids grow up shows me that some of my “issues” seem to have been caused by a combination of some of my personality traits and unhappy (even traumatic) remembered experiences that arose from my PS scar.
  • This leaves the first three items on my list as totally or largely unexplained except by the fact that some others with PS in their past have reported similar signs of trauma: obsessions, sensitivities, passive-aggressiveness especially towards authority, and “triggers”.
    The specialists in medical science, psychiatry and counselling I highlighted above, together with others who have worked on this, are able to tell us that indicators such as the ones I have mentioned are (or can be) symptoms of PTSD. PTSD has been long recognised in a relatively small group of people (usually war veterans) but was usually brushed off as “too bad, be glad, you’re a survivor”.  Only in recent years has PTSD been taken seriously, explored and much better understood, and as a result it is now better managed and treated.

QUANTUM2The coming of the internet has made it possible for people to network and share territory they have in common.  Much that was previously ignored is now shared, explored and explained.  I have learnt so much about my lifelong discomfort with aspects of myself!  I know now that my “secret inner self” is well within the bounds of what is normal after early surgery in a now hopefully bygone age.  I no longer have to worry about being weird or unique.  Others share and understand my pain and yet have lived a pretty normal life, as I have in fact!  I have been carrying the symptoms of mild ptsd, and counselling and therapy could reduce them but will never remove them.

So I can join those of a more outgoing and confident spirit and carry and show my scar with some pride: I am alive today because I’m part of the history of surgery, I’m grateful to God that I was born at a time when I could benefit from this, and I enjoy being part of the community of PS and infant surgery survivors.

And though I have missed out on certain gifts (how I sometimes long for a quick mind and body), I’m also grateful for the gift I have to explain things clearly, simply and patiently, and that in my senior years all this has come together in my blogging and online participation in the interactions of PS survivors.

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Learning about infant surgery’s long-term effects

Babies who develop pyloric stenosis (PS) more often than not suffer severe malnutrition and dehydration lasting a few days or longer, depending on when the condition is recognized, diagnosed and treated.  Early starvation affects the baby’s brain, and PS itself and the surgery that is usually chosen to remedy it can have lifelong effects about which I written a post.  Several of these traits are ones with which I have struggled, and since I learnt some years ago about the possible link between PS, early infant surgery and a number of developmental traits, I have been inclined to attribute some of my personal challenges to certain events in the first chapter of my life story.

Many years later, I am finding that one of the joys of grandparenthood is that it allows my wife and me to benefit from observing our children and grandkids at a time in life when we have become less busy and focused and more reflective than during our parenting years.

Living in Sydney for a couple of months has given us more time with our daughter’s family there.  Our clan has long recognised that our nearly 7 year old Sydney grandson seems to be more like me than any of our four children and 9 grandchildren.  The kinship is clear in his build (tall and lanky) and in some of his character traits, and as he grows and develops this is becoming even more apparent.

Some of my grandson’s ways are bringing home to me some interesting truths and even some significant questions to ponder.

Fearfulness is common to almost all children, but…

When we are small and feel vulnerable, any dog, loud noise and the sleeping at the home of a trusted classmate can all be very scary.  What has struck me is how difficult it is to reassure a child who is overtaken by fear.  Fear can be most unreasonable and often paralyses.  We have forgotten many of the parenting experiences we ourselves dealt with but are now regularly reminded that dealing with fears and phantoms is a big thing in families, and that for a while many kids are just not ready to slay their dragons.

My grandson used to have as many fears as other grandchildren of ours, but like them he has grown out of them and now deals with most of his fears quite rationally – even before his 8th birthday.  He is really quite confident and brave, handling the reptiles that were the feature of his last birthday party, as well as the garden beasties at home.  His mother was able to coach him to manage trips to the doctor for a booster injection, and to the dentist (an even bigger bogey).

All this has made me reflect on the fact that there have never been any real ogres and no-noes in my life, except that a surgical scar from an infant pyloric stenosis (“PS”) operation in my very first days has been something that’s taken me most of my life to come to terms with (and I know of others who are still in the throes of revulsion over a similar experience).

The key?  Good parenting can help an average child to deal with almost anything.  Parents who (like mine) have not dealt with their own hurts and traumas can make it well-nigh impossible for them to not damage their own children.

Humble and self-effacing

My family in Sydney has two cars: an old gas guzzler without enough seats for the family and is used as a work car, and an SUV family use.  My daughter and her husband decided the old work car should be replaced, so my SIL took his son to a car yard and checked out a number of cars.  Having done this, dad asked his son, “Well, what do you think?”  Sonny-boy looked uncertain so dad encouraged him to say which he thought might be the nicest car to buy.  His answer: “Well dad, they’re all nice but I really don’t like any of them.”  “Why not?”  The reply broke his father heart: “All of these cars have got enough room for you, mum and the [three] girls, but not for me.”

I’m also someone who tends to jump to unwarranted conclusions and sell myself short – as my family sometimes has to tell me.

Since reading that lack of self-confidence can be the result of the malnutrition that comes from PS, I have claimed that link for myself.  But I’m realising that although that this may well be a valid linkage, my genetic code is certainly also a factor.

Obsessive and scatter-brained

My grandson is (again like many children) quite obsessive: his present crush is on dinosaurs (and again, he’s not unique there).  He gets books on them, draws them, collects them in toy form in 101 varieties, watches every movie and YouTube he can find, talks and plays dinosaurs, and even roars and snarls at his sisters like the ones on the video.

He’s also outrageously scatter-brained, as I realise in the morning when my daughter struggles to keep him on task when he’s supposed to be getting ready for school.  It only takes a thought or something interesting in his field of sight, and he’s off-target and running even later.

This too has made me realise that being scatter-brained and as obsessive as I am about myself, my work, and my interests are clearly not only the result of a brain affected very early by malnutrition and the trauma of 1940s style surgery.

Uncoordinated

Last Saturday was the first time I could watch this grandson play soccer.  The game was a walkover for my grandson’s young team (8-1) – but not thanks to him… As for me, I felt both jealous and a strong dose of déjà vu.

Jealous because I grew up in a very busy migrant family in the 1950s when TV had not yet reached Australia and very, very few people could afford the time and money needed for kids’ sport: consequently I grew up knowing virtually nothing about the then popular sports and understanding even less.  This didn’t inspire practice and dedication!  I always felt so unwanted and miserable when I had to play basketball, rugby and soccer as an essential part of my high school education.

Déjà vu because although my grandson was being coached and trained to play a brand of football from an early age, with the keen support of his parents and a sympathetic team, he looked so much like I know I looked on the field: out of place, awkward, inept, running after the ball rather than managing it.

Lack of physical coordination is another recognised effect of the kind of malnutrition that results from PS in babies, and since reading this I’ve attributed the combination of my early illness, the post-World War 2 and migrant conditions, and my parents’ preoccupations for my years of wretchedness in school physical education and sports.  Once free of the straightjacket of the school program, I found I was much better suited to individual than team and fast sports, and came to love jogging, walking, hiking and swimming.

Now, who am I?

So much of what I’m seeing in my Sydney grandson prompts me to ask myself: to what extent have some of my problems been genetic, and how much is due to early brain and emotional damage?  Ultimately, it makes no difference now, as I’m grateful to be a PS survivor from an era when this was not as assured as today, and I’ve learnt to live a full and fruitful life despite some sports and social situations being not-for-me.

My time back in Sydney has certainly been an eye-opener, raising and clarifying issues, enabling me to know and understand myself and my story better as I watch my grandchildren growing their own stories.

What have you, the reader of these reflections, learnt about yourself from observing and comparing yourself with other family members?

Is a sick and starving baby affected for life?

Before a very small baby with an abdominal blockage such as pyloric stenosis is diagnosed and treated, it is actually starving to death.  Doctors and emergency departments often take days or even weeks to take the problem seriously.  Diagnostic tests may take another day or so.  It usually takes at least yet another day to control the dehydration and correct the blood chemistry enough to withstand the drugs and often surgery necessary for a cure.

How long can a baby go without its simple but essential nutrient and not be affected?

This is an understandable question which always adds to the immense pressures on the parents of such a desperately sick child.  It will take several years for the baby to develop enough to reassure the parents that all is well – or is it?  How can we really compare one child with another, even siblings?  Surely there are too many variables for us ever to know for sure, even though we may have suspicions.

Having had such very early surgery after a period of total starvation as a newborn baby, it’s natural that I am very much interested in this matter.  Research into the effects of early malnutrition on a very young child has been reported on for many years now.  But from what I have been able to find, the results are rather unclear but somewhat troubling.  They call for more work.

In a 1972 Swedish study over 203 patients treated for infant pyloric stenosis in Gothenburg between 1922 and 1942 were classified according to the severity of the exhaustion caused by their malnutrition.  180 of these people in later years registered for military service, when their height and intelligence test results were investigated, and 176 of these were contacted and interviewed for the study.
A significant relationship was found between the subjects’ adult height and their weight loss and degree of exhaustion during their illness.  The difference in the intelligence and adaptability tests between the most severely undernourished patients compared with those of the same age when they entered military service was found to be a very small one, and not statistically significant.
Another finding was that under-nutrition in infancy seemed to be associated with a decreased fertility in men, especially in the siring of girls.

In the July 1975 issue of the Journal of Pediatrics Dr P S Klein reported on a smaller but more comprehensive study.  It researched the effects of starvation in infancy on subsequent learning abilities, and because congenital hypertrophic pyloric stenosis (IPS) is relatively common, involves a relatively brief period of starvation in early infancy, is unrelated to socio-economic conditions and is easily correctable, babies diagnosed with this condition were chosen for the study!
A number of particular learning abilities together with the general growth of 50 subjects who had had IPS and were aged between 5 and 14 years, were studied and compared to 44 siblings and 50 matched controls.  Learning ability was clearly affected by the degree of severity of the starvation.  Starvation that resulted in a reduction of more than 10% of the expected body weight in infancy was found to be linked with poorer learning abilities, especially those involving short-term memory and attention span.

The following study is more reassuring:

From the available published information, the following inferences are warranted.
1.   Severe Protein-Energy Malnutrition (PEM) occurring throughout most of the first two years of life in children living in populations where malnutrition is endemic generally results in severe cognitive deficits.  In the absence of an appropriate rehabilitation programme or change to a stimulating home environment, this deficit will restrict the chances that the child has of taking advantage of the formal educational system.
2.   Severe PEM resulting from a biological disorder (e.g., pyloric stenosis) during the first two years of life in children not exposed to poverty conditions may, but generally does not, leave cognitive deficits that interfere with school learning.
Ernesto Pollitt and Nita Lewis, Nutrition and educational achievement,
Human Nutrition Center, School of Public Health, University of Texas

I have written on this blogsite about my own story and the suspicions I have that malnutrition has affected my intellectual, motor and social development.

I’ll never know, I guess.  Besides, there is really nothing that parents and often very little the medical world can do to prevent the short-term effects of a condition that develops to become life-threatening, but develops along a considerable variety of paths, some of them hard to spot at first.

Because I recognise that, I have got on with enjoying a life that despite its shaky start has been very happy and productive.  But the facts about infant pyloric stenosis and its diagnosis, immediate and long-term effects and its treatment need to be more widely known!  Hence this blogsite.

Finally this time, a test question:  How would you answer these two worried mothers?

QuestionWhat, if any, are the long term effects for an infant diagnosed with pyloric stenosis late?
My daughter had pyloric stenosis when she was 10 weeks old.  Symptoms began at 2 weeks.  She went 8 weeks before I finally took her to the ER.  I took her to the doctor 3, even 4 times a week because of projectile vomiting, no bowel movements and her diapers were barely wet.  The last visit to the doctor before going to the ER (which was on a Friday) he told me to give her diluted apple juice and that would help her have a bowel movement, and to call him on Tuesday.  The surgeons at [the] Children’s Hospital told me that Sunday would have been too late.  2½ days later she was strong enough to have the pyloromyotomy.  My daughter is now 13 years old but has learning disabilities in school.  At home she doesn’t listen, cusses at dad and throws major tantrums.  I’m not talking about the ‘normal’ unruliness of a teenager.
Could this be caused from being malnourished at a very critical developmental stage of life?  Anyone ever heard of this condition causing problems later in life?

QuestionMy son had Pyloric Stenosis, could this hurt his brain development?  When he was born, he weighed 6 pounds 4 oz. 5 weeks later he weighed 7 pounds 2 oz.  They said that was low for his height.  He started to projectile vomit most of his formula at 2½ weeks of age.  How badly to you think this could have affected his brain?  Do you think he will have to be in Special Education classes?
GreyDoc6 (“a retired paediatrician”) offered an answer that I have sadly come to recognise shows an all-too-common attitude problem of doctors –
I saw lots of patients with pyloric stenosis and most had normal intelligence except one who became dean of a school of law.

Pyloric stenosis affecting the brain may be a cause for mirth for some few, but parents and survivors would love the facts to be more clearly established by research.  Parents also love doctors who are not dismissive of patients who have done some homework, especially when the doctors themselves are not “across” the area of that patient’s concern.

I’ll never know for sure… but

At school I was typically 2nd in my class or subject.  Right through: very gifted but not a born academic.

I disappeared during phys ed classes if I could.  I never felt safe (let alone comfortable) and sport teams never wanted me on their side.  I am dreamy, slow and uncoordinated.  I love walking and swimming for leisure – in my own way and at my own pace.  My Germanic (or is it Nordic?) genes have made me lanky but no Samson.

I am loved and respected for lots of fine character qualities but my levels of personal and social confidence are not strong.

So far – so good.  We all have our strengths and weaknesses.  Life wasn’t meant to be easy. Every family has a runt (even if I was the first-born).

What I think may be significant about all this is that my four siblings seem to rate more highly in each of academic ability and memory, physical prowess and motor coordination, and social confidence… and that studies have shown that each of these areas is affected by starvation and surgery in early infancy.  Except social confidence, but that’s a story on its own… anxiety.

The physical and mental development of infants who have survived Infantile Hypertrophic Pyloric Stenosis (IHPS) was investigated in an interesting long-term follow-up study reported on back in 1973.

Just over 200 patients treated for IHPS at the Children’s Hospital in Gothenburg between 1922 and 1942 were classified according to the severity of their under-nourishment during their illness.  180 of these former patients later registered for military service, and their height and the intelligence test results were then investigated, and almost all of these were later interviewed.

A significant correlation was found between the adult height and the weight loss and the duration of their starvation in infancy at a constant birth weight.  A numerical but not statistically significant difference was evident in the intelligence adaptability tests between the patients with more severe under-nutrition and those of the same age at the time they entered military service.

The full Report of this study was included in the March 1973 issue of Acta Paediatrica (pp. 125-129).

This Ethiopian baby boy starved for too long before being diagnosed and treated for pyloric stenosis at 3 months

The Abstract of a report in the July 1975  Journal of Pediatrics (pp. 8-15) on the effect of starvation in early infancy on later development is rather brief but nevertheless very revealing.  It states that the researchers chose the starvation resulting from IHPS as their model in this study as it involves a period of brief starvation in early infancy, is unrelated to socio-economic conditions, and is correctable.

A number of specific learning abilities together with the general adjustment of 50 subjects, 5 to 14 years old, who had PS were studied and compared to those of 44 siblings and 50 matched controls.

Learning ability was negatively correlated with the degree of severity of the starvation. Starvation resulting in a reduction of more than 10% of the expected body weight in infancy was associated with poorer learning abilities, especially those involving short-term memory and attention.

My pyloric  stenosis caused a far greater weight loss than 10%, as it often does:  IHPS babies are small and frail, and delay before diagnosis and treatment is to be expected.

The most recent report I have read (again, sadly, only in abstract form) was on the work of four researchers in Sydney (Australia) over a two year period during 2006-2008.  43 infants who had had surgery for IHPS had developmental assessments at 12 months of age and were compared with a control group of 211.

This study found lower than expected developmental scores for infants after surgery for IHPS than for healthy control infants.  The infants with pyloric stenosis scored significantly lower on the cognitive, receptive language, fine motor, and gross motor subscales compared to the control infants.

This team found that their findings raise concerns over the potential impact of IHPS and its surgical treatment.  The Abstract does not mention whether their findings might be caused by the malnutrition and dehydration that accompanies IHPS, by the following surgery or by both.  They recommended further studies should be performed, including continuing developmental review, to determine whether these differences persist and their functional importance.

The full study report may be found in the Journal of Pediatric Surgery, December 2010, pp. 2369-2372.

Comparing my abilities with those of my brother and sisters is of course anecdotal evidence and thus of little or no scientific value.

There are any number of anxious parents on the web looking for explanations of their child’s learning disabilities, physical challenges and social difficulties after starting life with IHPS and early surgery.

While it is impossible to make direct connections, there are some well established correlations.