Long-term hazards

When your baby had infant pyloric stenosis (“PS”), the surgery marked the end of a difficult time for you and your newborn treasure… Right?

If that’s true of you as parents or you as the baby, you belong to the truly blessed ones – at least in this respect!

Patient & doctor01Most doctors and websites tell the parents that there are no long-term problems after PS and its surgery (pyloromyotomy).  Only a minority of the websites I have seen are a little more careful, assuring us that “most” babies will have no more problems.  None go into detail about that “most”.

In 20 years of trawling the web I have yet to find any mention (let alone a posting) of a substantially sized statistical study of the long-term problems that can possibly arise after the medical or surgical treatment of PS, the most common disease of infancy that is usually treated surgically.  This silence or disinterest makes it impossible for parents and “PS survivors” to know what to expect or look out for.  It also makes it impossible to know how common the complaints are – they are certainly numerous online.  Often it is also hard to know whether or not these complaints are due to PS, the surgery, or other factors such as heredity, environment, diet, or even attitude.

With all this in mind, there is a list of hazards and other conditions which may be possibly or likely linked with PS or its treatment.  My list is based on following several online forum discussion “pages” during the past 20 years, currently those of Facebook, Medhelp, Patient, and Topix.  What follows is a brief oversight; in coming months I plan to give more details and provide references for each of this list.

Here then is my list –

Adhesions
Adhesions03 abdomenIt is believed that 90% of us have adhesions, webs of tough scar tissue growing around and between our abdominal and chest organs, sometimes restricting and even choking their working, and sometimes tying them to the abdominal wall.  Surgery and other significant tissue damage, not only to the abdomen or chest, will usually trigger the development of adhesions as the damage heals.
However, only a small minority of us have major problems with these adhesions.  Symptoms are discomfort, pain, and disruption of the digestive processes.  Adhesions can cause pain that some doctors misdiagnose as symptoms of gall bladder disease.  They can also make cardio workouts painful and frustrate the hopes and dreams of body-builders.
Treatment is hazardous, as any breaking up of adhesions or surgery will almost inevitably give rise to more developing.  Careful massage and diet management may bring some relief, and surgery should be regarded as only temporary relief and thus a last resort.

Heredity
Because about 20% of PS cases have a family precedent and at least 3 locations on the human genome have been linked with PS, passing PS on to the next generations is a real possibility for some.  PS is regarded as multi-factorial, with a list of possible suspects including heredity and other issues such as our gender, constitution and feeding regime, and thus no PSer knows for sure whether they will pass the condition on.
We cannot escape our genes, but being aware of the several symptoms of PS is an obvious advantage in getting earlier and smarter diagnosis and treatment.

Brain damage
Diagn malnutr15 FStarvation and malnutrition have a serious effect on an infant’s fast developing brain.  It is probably valid to hope that PS is diagnosed and treated promptly, but there are far too many sad and bad accounts online of this not happening.
In fact, one of the mantras the anxious parents get to hear after enduring an unnecessarily long diagnostic process is: If you’d delayed any longer bringing your baby here it would have died during the night.  It seems such medical workers do not realise what that implies (if true): that incompetent or sloppy diagnosis has caused this infant to lose condition enough to be brain damaged if not dead.
Brain damage is hard to separate from genetic constitution, but starvation resulting in a reduction of more than 10% of the expected body weight in infancy has been associated with poorer learning abilities, especially those involving short-term memory and attention, and can affect a baby’s fine and gross motor skills.

Pregnancy
Pregnant06Mothers’ reports online about whether and how their PS scar affected them during pregnancy differ.  Many report no scar-related problems at all, while others do, and here too it is impossible to base risk factors on anecdotal accounts.
Reassuringly, nobody I have read has reported problems that affected the outcome of their pregnancy.  Quite a number had times of tightness, discomfort, a tearing feeling, and even pain.  Many reported that their scar’s appearance was affected: some only during the pregnancy, others found there was further lasting damage to their body’s appearance.
Many recommended massage with a suitable cream to ease discomfort and perhaps reduce the damage.

Scar shame
Child checking belly - DuleyAbigal heartPS survivors differ greatly on how they feel about their surgery scar, and those who network online are often quite vocal about it.  It would not be hard to link our temperament with how we feel about, handle and express ourselves about our visible imperfections!  It is reassuring to network, as we are reminded that none of us is alone in struggling with our uniqueness.
Gender seems to make little difference, maturity and age often do, and some of us carry our scar shame feelings to the end.  Here also it is impossible to assess numbers.
Many say they think little and feel less about their surgical scar, and some tell us they forget about it until asked about it during a medical visit.  They carry it openly and have a tall story ready for the inquisitive.
Many others hide their scar as much as possible (easier for girls and women), hate it with a passion, and are so self-conscious about it that it is magnified in their eyes.  Age often comes with greater self-acceptance, and with reassurance from swapping notes (and perhaps photos) with others.

PTSD
Doctor keep quiet 01Post-traumatic Stress Disorder is a set of reactions to a traumatic event.  Until the 1990s, infant surgery was often done without the use of general or even local anesthetics, as the availability of suitable training and drugs was limited.  So, many of the little patients were restrained, their agonising screams were ignored, and to make surgery easier they might be paralysed and a breathing tube inserted in their throat.  Other surgeons did anesthetise the infants they operated on, even in the early 20th century, but the common belief until the 1990s was that “babies do not feel or remember pain”.
As if the surgery was not traumatic enough, to reduce the risk of infection babies were often isolated from their mother during their hospital stay, and post-operative care during much of the 20th century was usually between 10 days and 3-4 weeks.
Small wonder that the sick infants’ parents were also traumatised, resulting in an inability or unwillingness to ever reopen the book to this terrible chapter.  And what about the baby?
PTSD is an extreme form of anxiety that we don’t easily bring into the open unless we decide on the need to do this.  Only since the late 1980s have the pain and memory mantras finally been invalidated, and it has also been shown that we can carry pre-verbal or somatic memories of trauma which our mind cannot recall.  Much valuable work on PTSD has been published and therapies have become available only in recent years.

GERD – Reflux – IBS – Hyper-acidity
IBS 02
Not only those who have had abdominal surgery in their infancy know about the misery that can be inflicted by a grumpy digestive system.
Doctors are often hard-pressed diagnosing what is causing a patient’s abdominal discomfort, and in fact some symptoms (esp. in children) cannot be linked with any known cause.
Several things are clear –
1. Although our digestive system may at times need medical or surgical intervention, it is an inter-related whole and does not always behave to the standard after surgical or chemical adjustment.
2. The most coherent theory about the cause of PS is that it is triggered by high levels of the blood hormone gastrin which controls the release of gastric acid (essential to digestion).  High gastric acid levels are not changed by PS surgery, so we should not be surprised if this characteristic continues to dog us for the rest of our days.
3. High gastric acid is linked with a list of abdominal annoyances including reflux or GERD, IBD, gastric ulcers and cancers, and trouble especially in the adjacent parts of the digestive system, the esophagus and duodenum.

Scar correction
Scar zipper01
Like each of us, every scar is unique, depending on a list of factors ranging from the surgeons’ choice of technique and skills to the peculiarities and condition of our bodies and the actual healing process.
Some PS scars heal with a minimum of disfigurement, but many become deeply sunken during the teenage years and later, and older PSers’ scars often look like an attention-grabbing TV antenna or fat caterpillar.
Although no surgical scar can be removed without trace, some PSers are so self-conscious or angry about their scar’s appearance that they want it improved.  Some scar correction is quite successful, and it gives us the satisfaction of having exercised our choice of surgeon and surgery, overriding something we cannot remember and in which we had no investment.  However, some surgical scars cannot be revisited because of the damage already done to nerves and blood vessels.  Antenna- and railway-track-like damage is usually too extensive to reduce unless it is part of weight reduction surgery.

Raising awareness of the issues
Thus the list of possible hazards after infant surgery is not insignificant.
Nobody will reasonably expect every doctor to have a detailed knowledge of every aspect of PS and the possible long-term effects of infant surgery.  But it is inexcusable when paediatricians, surgeons, family medical handbooks, and information websites deny or muffle the truth!
Group Of Colorful And Diverse People Holding A Meeting And Trying To Solve A Jigsaw Around A Large Rectangular Conference Table In An Office Clipart Illustration ImageThe large online forum sites mentioned above are (as far as I have discovered) the only available and helpful sources of detailed information about this subject, a fact that is often remarked on by the thousands who use them.  Every post may not be quite correct, but the sum total often satisfies the readers much more than their experience with the medical professionals.
Interested and supportive readers here are encouraged to do what we can together to raise the level of awareness of this subject, important as it is to those affected!
Tell something of your story and post it to MedHelp, Patient and Topix – the best addresses are listed below, and you usually do not have to register to post as a Guest.
Facebook is accessible to members only, but it has by far the busiest and most informative traffic.  There are a dozen or so Facebook “Groups” dealing with PS, and others for other conditions of infancy.  The largest Facebook PS Groups are “closed” – accessible only to those who register as members of that Group, thus encouraging trust and openness.  The “Pyloric Stenosis Support Group” is the largest and best to try first.

Facebook – Pyloric Stenosis Support Group (non-member will need to join first)

MedHelp – Pyloric stenosis scar tissue (infant) causing problems in adult

Patient – Pyloric Stenosis and its long-term Effects

Topix – Had pyloric stenosis as baby, now have brief recurring spasm in region

The Index on this Blog’s banner, as well as the Categories and Tags boxes on the right of the Blog page, also include links that may be of interest.

– Fred Vanderbom

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Author: Fred Vanderbom

A stable upbringing in a Christian home, a long and happy marriage and family life, a lifetime of productive and steady work in close touch with many people - and with the God our world can know through Jesus Christ, many good and shaping experiences - I believe I've been very privileged. By some blogging and other work in retirement I am enjoying being able to offer some of what I've learnt for those interested. Your comments are always welcome.

6 thoughts on “Long-term hazards”

  1. What a marvelous article with perfect graphics to match the message! (That one of the starving baby was spot-on.) Those searching for answers will find some in this post. Many of us were told that PS surgery was 100% effective, and certainly, that was an over-zealous, if not downright ignorant and short-sighted, prediction. I’ve struggled with scar shame and PTSD and wish I would have had information like what Fred shared in order to understand the source of many of my difficulties. As the post pointed out, why is there little in the way of studies about the post-surgery lives of PS babies and their families? Furthermore, after dealing with this disease for more than a century, why don’t we know its cause? In any case, those trying to cope with the aftermath will be helped or, at the very least, steered in the right direction by the information Fred shared.

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    1. Thank you Wendy for your encouraging response. Many PSers are frustrated by the lack of what seems basic information about the causes and possible after-effects of PS. There are several reasons for this, some reasonable, some not all that acceptable. In general however it comes down to money and the need to know: it is undeniable that there has been much progress in medical science and techniques during my lifetime, and that by most accounts very few PS survivors have not been able to live a fairly normal life despite the inner pain that some of us still carry.
      Sadly, it is also true that the medical profession has a few widespread attitude problems. This is perhaps the main reason you and I blog to build the availability of robust information about PS and its possible long-term effects.

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  2. I had PS at 2 weeks, I’m 24 now, I think one of the forms of PTSD that I have from going thru PS as an infant is my very very good sense of smell for baby’s milk

    Ever since I could talk, even before that, ever since I could remember, for some reason the smell of baby’s milk was very strong to me, as a small kid when I was able to talk Id smell a baby (later I realized it was actually the baby’s milk and not the baby) and I’d tell my mom “do you smell it? It smells good!” I didn’t know it was the milk that I was smelling, I thought all baby’s just smelled good, every time I came near a baby like when a new family member was born I’d want to hold the baby only so that I can take deep breaths to smell the baby like I was smelling a freshly picked rose out of a garden, I’d tell my mom “i love how baby’s smell!” then I noticed that I’d get that same smell if a woman that just gave birth was anywhere near me, as a kid sometimes I’d say to my mom “where’s the baby?” And there was no baby, but I could still smell the milk in the new mother

    Even to this day I can smell baby’s milk from a mile away and it still smells like the best thing I’ve ever sniffed, it actually gives me a calming feeling whenever I smell it, no matter where I am or what I’m doing, if I smell it, it hypnotizes me and the only thing I’m thinking is to continue breathing in the smell, it makes me feel calm as well as smelling good

    Last year, I thought about it and I think the reason that the smell is so recognizable to me and smells so ‘good’ to me is cause at the beginning of my life I would eat and throw up, so I was having to smell baby’s milk and that smell was coming from something that I knew was going to give me life but I couldn’t keep it down, then once I finally had surgery and recovered I was able to drink all of the milk and keep it down

    It even carried over into my love for cows milk when I got too old and stopped drinking breast milk, one of my first words was actually “milk” cause I always wanted milk
    Cows milk gave me the closest thing to the baby’s milk that I could get so as a kid that’s too young to talk I think that’s why I craved milk so much, milk is still one of my favorite things to drink, I drink it like water, as a kid I drank so much milk that I started getting white spots all over me and the doctor said they wer calcium spots due to calcium build up

    Well that’s my story, kinda long but it really makes me wonder why I can smell baby’s milk literally from down the block, even if I walk in a room and a baby was in that room for just a second I can still smell the milk, I think my PS caused me to have a very strong experience with baby’s milk in the first 4 weeks of my life and the smell was burned into my brain, and that’s probably why I’m so addicted to cows milk cause it’s only thing I’ve ever drank that has the same texture and taste

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    1. Thank you for your delightful story of “somatic, body, and retained memory”, Tony! So different from the usual and yet it’s so obvious, heart-warming and powerful! Most of the PTSD and retained memory experiences I’ve heard have to do with the surgery, medical people, separation, etc – all the scary things. Your memories relate to your focus on recognizing, wanting and finding comfort and affirmation in the life-giving milk your mother had for you! And just like the other memories, it has become more understandable as you have reflected on it. If this is your take on PTSD, let it roll – and don’t abbreviate it!

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      1. Wonderful story–so positive and affirming. As per Fred’s reply, I too have so many negative associations with my PS surgery; it was a relief to hear of a positive experience. Mom told me of my projectile vomiting–“four and five feet into the air.” I wonder what smell I associate with it. I’m not around babies much but plan to be in the near future and will keep attentive to my associations that arise with a baby’s smell. Thanks, Tony, for this affirming story. I’m so glad that you were eventually able to digest milk and other food and that for you, babies are a positive association.

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