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.

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15 thoughts on “Is a sick and starving baby affected for life?

  1. wendy williams

    I was gripped by the testimony of the parents and by the foolish commentary of the retired pediatrician. Parents deserve respectful and informed answers to questions. Too often, medical professionals ignore, in one way or another, questions from sincere, concerned parents and family members. Your article brings up an extremely important subject, one that speaks to the situations for many infants suffering from a variety of diseases and conditions. I wonder if a pediatric neurologist might have the answers to some of the questions you pose. In any case, this rarified knowledge seldom makes its way into the hands and hearts of the people who desperately need it–the patients and their family. I for one am glad that you are bringing your knowledge to bear on this subject.

    Reply
    1. rosaline

      i had ps at 3 weeks old. i was given a IQ test during the 5th grade and i was deemed to have an above average IQ, i had behavior problems which could have been due to other factors, but i had the tantrums, i have always been highly emotional, and i remember being depressed as a 5 year old… i have struggled with clinical depression my entire life.

      Reply
      1. Fred Vanderbom Post author

        Thank you for sharing some of your story, Rosaline… not a happy one and all too typical.
        Having above average IQ is not necessarily an issue: the Py people I know are also in that bracket – they’re the people I most mix with! But though I was usually at the top of my class, my 4 siblings have all done better than me in academic results, social skills and self confidence. That probably means something.
        The emotional issues you have (had) are of course not unique after infant surgery. But they certainly point very much in that direction, especially in view of the little research that’s been done and the experience of others. What you mention of your struggle with depression is very similar to that of others who have added Comments on this blog.
        Best wishes, and I’d invite you to write some more about your experience.

    2. Kellie Gasink

      Thank you very much for your article.
      I am a 44 year old woman who had pyloric stenosis as an infant that was not diagnosed until I was 2 1/2 months old. I guess it was even more common in 1968 to misdiagnose females. It would have to have been poor medicine, right, to allow an 8 pound girl to get to 4 pounds at 2.5 months old? Sadly, I can no longer believe that severe protein energy malnutrition had no effect on me. I would have come to this conclusion a long time ago, but the necessary information was not available to me. I appreciate your honest words, which in my opinion, were also not alarmist or overstated. Parents and affected people absolutely need the best information that science can provide, whereever that information leads. In other words, people like me need people like you out there.
      Anyway, prior to about one month ago, I never once complained about my history of pyloric stenosis, although I might have mentioned that I have a scar on my stomach or jokingly mentioned that I am 4’10.5″ tall and my brother is 6’2″; and well, we have the same parents and it was not exactly supposed to be that way. Now I would say that I have central nervous system damage or right brain “problems”. My extreme difficulty controlling my emotions is perhaps a result of organic changes, differences, or dysfunction at a crucial time in brain and body development. I would not brush off my depressive disorder as unrelated. I would not think my slight difficulties with balance or coordination (pronounced when I first started to walk) were unrelated. I would not think my social difficulties or problems with visual perception, recognizing people, places, and things were unrelated. I would think twice before blaming myself if my head spins when I am driving or I run in stupid circles. Please know that I tried to commit suicide as an adult teenager, and alas I will not once again think that the effects of PEM are completely unrelated because there is an increased rate of suicide in severe PEM survivors. I guess this is one of the challenges of surviving this particular bump in one’s own history.
      So thank you for your article. I hope you read the positivity in what I am saying here, not any negative. The only thing anyone ever needs to be concerned with is a LACK OF INFORMATION. Knowledge is crucial and will make all the difference. I encourage parents or affected individuals to consider neuro-psychological testing to look at cognitive functioning. Obviously, attentive medical care for physical health is necessary. I don’t think that social difficulties or emotional troubles should be ignored, but rather should be quickly and compassionately managed. I think these things are especially important if malnutrition was significant enough to have caused growth stunting. I know I am a success story of treatment for pyloric stenosis. For one thing, I am very healthy and I am alive. I am also an attorney and a mother of three children. And while I struggle in many areas of my life, I have an ease with words. In the end, I was not “stunted” by pyloric stenosis, but I was perhaps by a lack of knowledge. In my experience, it is only a lack of information that can lead to rather negative effects.

      Reply
      1. Fred Vanderbom Post author

        Thank you so much for your contribution here, Kellie.
        As you will probably have learnt by reading material on this site, everything you write is common to a number of those of us who have had pyloric stenosis (PS). I have written in another post about my problems with coordination and balance, and I share with you some of the other “pain” you mention – and all of these more severely than my parents and my 4 siblings. Your travails are not unique, and although it will be hard to prove that the challenges you and I have had are caused by PEM, the circumstantial evidence certainly points that way, doesn’t it?
        What my blogging colleague, Wendy Williams, has written about her own journey (and her sites, “Myincision” and Re-Storying my Life” are linked to this one over on the right) also shows several parallels to your story… and all three of us have a way with words and have been successful and respected in our fields of work!
        You will understand that what I have learnt about the whole subject of PS, as well as my particular abilities, has driven me to commit so much of my time to this matter. Information (and lots of it) is what is needed here to reduce the impact of this little-known but all-too-common malady on its survivors’ quality of life.
        I am very grateful at your letting me know that my writing has shed some small light on your living and understanding of your journey.

      2. kellie gasink

        It is clear that medical science needs to “catch up” here and do better where they are failing. Certainly PEM is known to have serious health consequences, in fact the most serious health consequences. It is known that severe malnutrition causes death and at minimum, serious risk to every organ in the body. No one in the field of science thinks these effects are merely “temporary” if survived. Doctors know better than the rest of us that structural “changes” actually do happen to the brain and body; and at best doctors are merely HOPING that these changes are not permanent.
        In fact, the changes and damage have already happened to the extremely vulnerable infant; and doctors are hoping that some or all of this damage can be reversed, but they also know that it cannot be. Growth stunting is irreversible, and so is much other damage. Brain and body are one. So if six inches of my height disappeared, where did the corresponding portion of my brain go? If this part of me ceased to be me, then who am I?
        Bottom line here is the research exists for doctors to do better for their patients. All that would be necessary is to let their patients know, who were too little to speak up on their own and too young to ask questions or advocate on their own behalf, that they are subject to certain risks and those risks will be screened as appropriate. Just say, “you had pyloric stenosis as an infant, so we are going to watch for growth, and check with you regarding any physical concerns”. “We are going to check with you yearly regarding any learning difficulties and the state of your emotional health”. The issue here is not what will result from certain events, but rather an issue of properly managing risk factors. For example, in medicine, “obesity” is always a risk factor and “hypertension” is always a risk factor and those are managed as such. The linkage between malnutrition and effects on the psyche and on learning and attention are known, as is the basic mechanism and reason for this; although the brain and body heal themselves in many ways so that the “exact” effects are not known for the individual. It is known that the greater the growth stunting, the more likely there will be other vulnerabilities manifest as well.
        To me the good thing is that people who have been affected by severe malnutrition, wasting, and this neurological assault have developed new brains, different minds. I am convinced that if certain parts of the right brain, for example, do not work correctly, and we stumble and fall initially, that miraculously, as our mothers and our doctors have sought to give us every chance at life and give us new life, that our minds have altered, and new paths were created that connect our left and right brain. We perhaps have a greater ability to intuit and to bring together information from a vast number of experiences and places at a greater speed and more efficiently. Whatever the process, not unlike the process by which a woman “knows” she is pregnant before she takes a test or counts days, this is a right brain process and an increased interaction between both hemispheres that is related to emotionality.
        Also, I went to the website of Wendy Williams, and it was such a beautiful picture she drew of herself as a baby, such a beautiful drawing!

  2. Melissa

    Your research compares apples to nothing else. How about a study that compares the intelligence of individuals that had PS to individuals that did not have PS? This is not mentioned anywhere in your article. If such research were to be conducted, you might just find the answer to your question, that the results are the same, whether the individual had PS or not. Let’s face it, in today’s society some people are smart, and some people are not so smart. My brother-in-law had it; he is a natural leader with great intelligence and charisma. I had it; I made A’s (and a few B’s) all through college. My son had it, and although he is now only 18 months old, he is in the 90th percentile for height and weight and has progressed either at pace or slightly ahead for motor, speech, and cognitive development. And I’ve encountered plenty of people who have not had the condition and they would fall into the “not so smart” category. From the fact that you have written a well-worded article, and did reasearch, I would assume that you are highly intelligent and that you should not worry that you could have been smarter. Infants are amazingly resilient, and that itself is part of the miracle of life.

    Reply
  3. Fred Vanderbom Post author

    Your comments are worth raising and valued, but re-reading my blog I think the matters you raise are covered fairly well? A few comments.
    The first two studies I mentioned did compare PS people with control groups. All three studies were published in scientific journals which would mean they have passed peer assessment. But it is true that it’s only a number of research projects that together may tell us whether PSers are indeed more at risk than average. I’ve tried to indicate that with my comment that the picture that I’ve been able to piece together is less than conclusive to me. And sigh, I wish I could do some research of my own.
    The PS people I know or with whom I’ve interacted would like you, your family and me have little reason to fret about having learning difficulties. But others like a niece of mine by marriage might well; although she is just getting on with her life, is she part of a silent majority who could have been helped by e.g., faster diagnosis and better parental support? From what I’ve found, I suspect this may often be so.
    Height and weight are an interesting area I cannot quite grasp yet. It is often mentioned that PS babies thrive after their recovery, and I did, in weight, height and well-being (judging by the photos). But the Swedish study found that reduced height was “significant”. It seems from this that (1) I may not be typical, (2) the “catch-up” growth spurt doesn’t always last.
    In another of my blogs I’ve mentioned some ways in which I believe my siblings are ahead of me, and wow, all these areas are mentioned in the research into possible ongoing effects of PS or its treatment. So, although I’m living to the full, happily and productively, I also believe there are good reasons to air some questions and issues.

    Reply
  4. Amanda

    I have looked and looked and looked for any type of long term effects after a pyloromyotomy or effects of starvation in infants for so long: I am glad someone has finally given me some kind of relief. I am so disgusted with the doctors’ answers. My daughter had PS and had surgery at 7 weeks old; I was told she was normal and to switch formulas before I diagnosed her myself and confronted the doctor who finally decided to do a test give me a break! She is 1 year old now and I took her to get her shots. I always thought she was extremely small for her age and was confirmed; indeed she is over 6 inches shorter than average but her weight is in the 50th percentile. I haven’t noticed any significant learning disabilities; every child is different but if I compared her to my 4 year old she is a little behind in verbal and mobile. Also I have wondered could a child have bowel problems because of PS, because my daughter has had chronic diarrhea since her surgery and I have struggled with diaper rash because of it. However, I did switch formulas to soy and it seems to be a little better but not by much. Thanks for the article. Amanda

    Reply
  5. Fred Vanderbom Post author

    Glad you found this blog series. Your story about your daughter’s diagnosis is far too common, I’m afraid. Whilst recognising that good diagnosis is a gift as well as science and that vomiting in infants can have any of a list of reasons, my blogs often challenge doctors about the attitude problem too many of them have. But is anyone listening? And many medical schools have fed this offensive attitude. I’ve suggested some ways anxious parents can help and be helped.
    Various continuing gastric problems have been established as quite common after infant ps surgery. All anyone can do about these is what you have done: try different things, and thankfully most kids outgrow them. In later life adhesions sometimes make their ugly presence known, and most just have to live with them. Thanks for your input.

    Reply
  6. Dawn

    My son is now 17. He had ps and surgery at 5 weeks. We had similar problems with the diagnosis that others have described. He appeared to make an excellent recovery and is normal weight and height. He certainly has concentration problems but I have just put this down to normal teenage behaviour. Over the last few months he has been complaining of acid reflux… Neither me or his father have ever experienced this. Could this be a long term effect of the operation?

    Reply
  7. Fred Vanderbom Post author

    What you describe is also typical, Dawn. Slow or sloppy diagnosis, a beautiful recovery (my photo of a flourishing Fred at 9 months is the usual story), and then in later years the developmental, gastric and/or adhesion problems set in, and I believe that I too have signs of the first two of these three. In one of my posts about the 1980’s I mention some of the studies done on these and other side effects of PS and its surgery.
    As my symptoms are mild I’ve never sought tests. Your son would also need enough motivation to have tests to know more clearly, and I expect most doctors would not bother with tests unless things were pretty bad. And even then it would probably be hard to make a clear link. But the stats and stories certainly indicate the likelihood of a .cause and effect Best wishes to your son!

    Reply
  8. Kim Hood

    i have twin seven y/o daughters that do not have PS, but were intentionally starved by their birth parents til they were taken away at 10 weeks. They have a lot of behaviors that you have described that children with PS have. I have been looking for answers for years. Mostly on what I can do for them to maybe reverse the damage? The only answers I can come up with is that every child is so different depending on how long it went on and every child’s brain was damaged differently. That there is no help? It’s so frustrating to just watch them grow up knowing they have these deficits (brain damage) and that nothing can be done? My one twin that was more severe has some nerve damage. It seems to be getting better, but she has had trouble feeling pain (especially in her feet) and does not ever feel full. She will eat until she throws up and is about 10-15 pounds heavier than her identical twin. Have you heard of anything we can do for these children to help them?

    Reply
    1. Fred Vanderbom Post author

      Kim, this is an awful story, and you are working to bring some healing. Thank you! I am not a psychologist or therapist, but these skilled people (perhaps linked with or recommended by the girls’ school) could advise you or recommend somebody. My wife and I have a strong interest in helping children and our daughter (interstate) is a school psychologist; we spend time with her next week and will discuss what you have told us here.
      There is quite something that you can do yourself, however: while it’s true that deep emotional damage can be inflicted at a very young age and remembered (though not consciously in the memory), these altered behavior pathways can be redirected to a good extent with patient counsel and time. If the girls will talk about what’s unusual, you can help them to understand and make choices which they can work at with patience and kindness (no threats or punishment here please!). If the girls won’t talk you’ll need to take opportunities as they arise (but gently), or wait until they are ready and more maturely able to handle shaping their lives for the future. There are books on all this, but many will find them hard to find or select. You may also benefit from being guided by a professional. But a very good psychiatrist in my church keeps telling me that apart from the medical side (treatment, drugs etc) a wise, caring, patient and sensitive adult can do as much good as a trained counselor. Medication may help (under professional guidance) but it is usually better to do without and work with the bonds of your love, secure home and caring relationship.
      Please feel free to ask more questions, here or via the email address under some of the top-of-page tabs.

      Reply

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