Author Archives: Fred Vanderbom

About 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.

How Japan handles infant Pyloric Stenosis

Most readers of this blog are more than interested in Pyloric Stenosis (“PS”), either because they or one or more of their children had infant PS as a baby.

PS is the most common form of bowel blockage to affect newborns in their first 4 or so months.  In most developed countries, all but the mildest cases are treated surgically. The surgical technique is a long-standing and firm favourite among surgeons: once mastered it is quick, simple, almost bloodless, and usually immediately effective. Parents who had been traumatised by their baby’s uncontrollable and violent vomiting and then by having to surrender their little one to be anesthetised and then cut open receive their little one back alive and with the promise: All done, you have a new baby, sick no more, home soon, and nothing to worry about in the future!  No wonder surgeons just love the Ramstedt procedure!

But if you look up “pyloric stenosis” on any of the larger social forum websites, you learn more.

  • The parent trauma resulting from PS and infant surgery can be deep and long-lasting,
  • this can affect the child also, and
  • the surgery is not always free of long-term problems, in both the immediate and long terms.

Such problems are probably far from the rule, and most Py babies seem not to look back. However, there are no substantial studies on this subject, and the ongoing effects of infant surgery on parents and sometimes the whole family, let alone the patient, can certainly be significant.

During my 20 years of researching the many issues related to PS, I have been surprised to learn that in some developed countries far from the Anglo-European world, surgery is the exception rather than the rule for PS babies.

The reports relating this are few but persistent.  For many decades now, academics and medical practitioners in countries including Japan, Taiwan, and Turkey have reported on regarding PS  surgery as a last resort.

Their policy is to treat most infant PS medically as the first option. The drugs involved are atropine sulphate and Ranitidine, drugs that reduce gastric acidity production. Very small or fragile babies, and those that do not respond to medical treatment within a stated time, are referred to a surgeon.

The outcomes are comparable by almost every standard: morbidity, mortality, and short-term problems. The hospital stay is longer, but the total cost is lower. Parents are happier and less traumatised.

Now a  2018 Japanese study has reported a small trial of adding a second drug, nitroglycerin or glyceryl trinitrate (GTN), in those cases that do not respond to atropine sulphate.  GTN is widely known as an explosive but is also often used to treat heart conditions.  Using both drugs meant success in treating all the PS infants in the study.

It is well worthwhile clicking on the link in the previous paragraph to read the full article, published by Open Source publisher Science Direct.

This is a story worth recording also! Most medical reports are published by large for-profit companies that first charge researchers for publishing their work and then the readers for access to the reports and discussions.  Open Access publishers believe that new research and discoveries should be published online without cost to the authors and should be freely available to anybody interested.

Posting this great news makes me soooo happy!

I am one of many millions who have gone for years hating our scars from infant surgery. PS survivors know that without this damage most of us might not be alive today!

But what if we knew that our parents had had a choice between a few days or weeks of supervised medical treatment – and disfiguring surgery?  And that they chose surgery without considering how we their child might be affected by that in years to come? We PS babies had no say in our treatment – but our parents were our advocates!  And parents who learn that infant surgery not only saves lives but can come with adhesions, collateral GI damage, and/or long-term psychological effects… who would not give medical treatment a try first?

This free medical article from Japan explains how treating infant PS medically is their first option – and it’s all that’s needed for up to 90% of PS babies to survive. This case reports details 2 cases when old-established medical treatment failed but was successful when combined with skin patches of another drug!

But… can our surgeons wean themselves off their favourite surgery?

Advertisements

Pyloric stenosis can be for adults too

Infant pyloric stenosis (“PS”) is not well-known in the general community.  Many of those who have been affected by it had never heard of it before.  But today far, far fewer people know anything about the adult form of PS.  As I will explain below, this is (in large part) a measure of the tremendous progress that medical science has been made in this area.

The stories of adult PSers vary even more than those about the infant form of the condition.  Some may find that hard to believe but it’s true!

When did problems start?
What happened?
What did the doctor say and do?
Did it work?
What happened then?
What choices did you face?
How are you doing now?

Think about it:  for adults there are many more variables than a baby might have: diet, wellness, lifestyle, age and stage of life…

However, the basic cause of all PS seems to be the same: high gastric acidity.  And one of the symptoms is usually the same: vomiting that is often severe and possibly (especially in infants) life-threatening.  But unlike babies with PS, adults usually find that with the loss of weight and wellness come pain, bloating, food intolerances, and reflux.  These are usually not a problem for the hungry but (at first) happy infant PS spitter.

In the infant disease, the high gastric acid level over-stimulates the pylorus (the circular muscle valve at the stomach’s exit), causing it to thicken, toughen and choke the muscle’s ability to relax and pass food.

Adult PS is also caused by high acidity, and often also by a virus, Helicobacter pylori, which has the nasty habit of stimulating acid secretion.  The acid erodes the stomach lining and creates conditions which enable the virus to trigger the eruption of gastric ulcers, which then scar as they heal, so thickening the walls of the stomach and pylorus, ultimately narrowing and blocking the stomach outlet.  If left untreated these ulcers can also give rise to stomach cancer.

These differences do not affect the name of the condition: “pyloric stenosis” means a “narrowing” of the pylorus (which means “gate”).  The term “hypertrophic” means “enlargement” and is only used of the infant form.  The effect of PS, whether in its infant or adult form, is also the same: the narrowing of the stomach’s exit ring muscle, causing vomiting and a reduction of food throughput, and thus starvation.

The difference in the development of the two forms of PS explains why the relatively simple “fixes” for infant PS (medication or surgery to relax the pyloric ring) do not relieve the adult form.  The PS baby’s problem is the thickening of the pyloric passage’s muscular outer layers, whereas the adult’s scarring, narrowing and blockage occur inside the pylorus or at the antrum, the tapered (narrowing) part of the stomach closest to the pylorus.

Adult PSers suffer from a range of symptoms including vomiting, reflux, pain, lack of appetite, and inability to maintain body weight.  The adult patients’ general practice doctors and GI specialists will try various treatments, starting with drugs to kill the virus infection and reduce acidity, and then relaxant medication and repeated stretching (“dilation”) to widen the pylorus.  Dilation is often repeated several times but is hardly ever successful as a long-term remedy. Sooner or later the patient usually decides to continue to one or more of a short list of surgical remedies, all of which are more severe and often less effective than the rather simple pyloromyotomy which is the usual surgery of choice for infants.

Pyloromyotomy

The simplest surgical remedy is pyloroplasty, a technique that was modified to become the pyloromyotomy which has usually remedied infant PS since Ramstedt’s accidental discovery in 1912.  Ramstedt discovered that it was not necessary to stitch the cut pylorus after he’d split it to relieve the enlarged muscle. He left the gaping pylorus wound to heal by itself in time.

[Select an image to enlarge it if you wish.]

Pyloroplasty

Pyloroplasty

But very sometimes the infant pylorus will not stay open for various reasons, and then a surgeon may return to the pyloroplasty: here the pylorus is split down to the mucosa or inner lining lengthwise (as in a pyloromyotomy); in a pyloroplasty the split muscle is then stitched closed across the pylorus, thus forcing it to stay open.  But because the adult pylorus is often scarred (thickened and hardened) by ulceration, it is often not in a fit condition to be modified.

Gastroenterostomy

The second option is commonly adopted: gastroenterostomy is a bypass of the pylorus by joining the duodenum to the stomach.  This removes the pyloric “gate” between the two which understandably has an effect on digestion.  Dietary changes and smaller, more frequent meals are necessary and often the “dumping syndrome” becomes part of daily living, as the body struggles to maintain a regular and appropriate source of energy.  Gastroparesis is a fairly common problem after gastric surgery: damage and interference cause the nerves and muscles of the region to stop working as they should.

So adult PS is more complex in its causes, symptoms, and available treatments.  And all these several treatment options are far from assured of success, as our gastric passage is easily unsettled and has a mind of its own: it is part of a complex network of different and linked organs and chemical input and processes.  Moreover, like any worker our abdominal organs can protest against being handled with less than good skill by working more slowly or sometimes a complete stop-work.  Medication and especially surgery can be quite successful or can result in unwanted and significant continuing physical side-effects.  Some “survivors” are pleased with the results of their choice, and others find they have to “adjust”, sometimes struggling to do so.

“Major adjustment” is thankfully something that is needed by only a very small minority of infant PS survivors.

Scared_DoctorDespite the dismissive words and comforting promises of pediatric surgeons, infant PSers also run a risk of a short list of abdominal and other complaints, some of them after their early surgery and then possibly also in later life.  Remember that the pyloromyotomy does not deal with the baby’s high gastric acidity.  One of the long-term risks is reflux and developing gastric ulcers – and as a result the adult form of PS.  Deja-vu!

But there’s also good news.  Today, thanks to effective and modern surgery, deaths from infant PS are almost nil.  And adults will find that with antibiotic treatment, H. pylori infection is usually quite easily dealt with, and so gastric ulcers and related surgery peaked in the 1970s and are now far less common.

Some personal observations are indicative despite being anecdotal rather than based on a careful study.  Adult gastric ulcers and PS used to be quite common but the only person I have ever known with it in 70+ years was one of my uncles – possibly a family linkage there?

Contrast this with the 8 or so infant PS patients and survivors I have known of or met.

The reader may discover similar figures!

Another measure is Facebook: following its PS Groups for 10 or so years I have logged 1,020 infant PS survivors but “just” 56 adults struggling with the condition of adulthood (several of tham after having survived infant PS).

The medical journal The Gut published an article in 2011 titled, The scars of time: the disappearance of surgery for pyloric stenosis – referring to the virtual disappearance of the adult form of PS, usually caused by peptic ulcer disease.

If medical science had made similar progress in reducing the incidence of infant PS, many parents and survivors would really party!

For readers who have stories or questions about adult (or infant) PS and its treatment and who use Facebook, I can recommend its “closed” Pyloric Stenosis Support Group which includes more than 50 members who have experienced and have posted (in great variety) about their adult form of PS.  (Any Facebook subscriber can find a “closed” Facebook Group, but it cannot be opened and read only by those who have joined that Group.)

Can Pyloric Stenosis come with long-term effects?

Ask your General Practice doctor or a pediatric surgeon about the long-term effects of infant pyloric stenosis (“PS”) and you will almost certainly be told there are none.

However, the volume of questions, complaints, and feedback to online social forum sites such as BabyCenter/Centre, Facebook, MedHelp, Patient, and Topix is a clear sign that the answer to this question is not quite as clear and simple!

The issue of possible long-term gastro-intestinal (“GI”) and other complaints after PS is in fact a complex subject.  The social forum interest mentioned above shows that there is a short list of long-term effects that those affected suspect may not be unrelated to having had infant PS and/or the surgery to remedy it.

However, many of these complaints are hard for medical science to study and possibly recognise, and therefore for your doctor to treat.  So unfortunately for us, many busy doctors will brush off patients’ attempt at consultation about them as a waste of their time; others will recognise the problem but can usually offer little more than sympathy!

Besides this, GI problems in general (apart from PS) are the most common complaint we take to the doctor, so unravelling their cause and getting effective treatment is a painstaking business! In fact, a small but significant percentage of GI complaints have no verifiable cause at all – and even have a name: “Functional Abdominal Pain Syndrome”.

So… what is beyond doubt?

All surgery (even today) comes with short and long-term hazards, which are acceptable if a life is at stake.  These hazards have been minimised and some virtually eliminated in recent decades – but several remain.  The list of possible immediate and short-term hazards includes anesthetic complications, an unsuccessful procedure (so repeat surgery), wound disruption, and infection.

Those that can arise in the long(er) term include surgical adhesions, collateral damage (usually to the duodenum, stomach or vagus nerve), and emotional issues ranging from scar shame and emetophobia to pre-verbal trauma or mild PTSD.

If the baby has been significantly starved for any reason (usually poor and delayed diagnosis) there may be lifelong effects on several areas of brain function.  Emotional damage can also result from (as happened quite often in the past) the baby’s surgery being done with inadequate pain control, accompanied by significant maternal separation, or by the parents’ trauma resulting from the PS and surgery in any way being conveyed to the infant or to the growing child.

Then there is a short list of GI issues, which are common (also) among people without PS and PS surgery in their early history.  However, these problems seem to be experienced more often by survivors, and are acknowledged as possibly linked by some medical professionals and by several (mostly small) studies.  The theory that high gastrin levels (a blood hormone that controls gastric acid release in the stomach) causes PS in babies is one of the most obvious and plausible among the causes / etiology of IHPS, and this theory links strongly to GI problems in later life. It would also explain why GI problems can arise directly from the subject’s history of PS (the condition), and not the surgery.

The list of long-term GI complaints common among PS survivors includes reflux (or GERD or heartburn), several other GI development faults of infancy, high acidity causing IBS, and sometimes gastric dumping, ulcers and cancer.

There have been more than a few small studies reporting all this, and a few social forum reports of medical professionals who recognise the linkage from their own research and experience.

It may come as a surprise that so little is known (or recognised) about the possible long-term medical issues after PS.  It is because PS is so easily and usually successfully dealt with, and I suspect because the long-term problems are not life-threatening, that there have been no large studies of this subject area.  Besides, there are many more pressing medical challenges that need research time and funds.

The only large study that has stood out showed that the risk of PS is very much raised by mother or newborn using any of the macrolide family of antibiotics – which also relates to gastrin levels!

Despite all this, there has been at least one recent attempt to set up a sizable and robust study of the subject – which the PS community awaits with great interest!

In the meantime it must be realised that the medical community continues to submit to the surgeons’ love affair with PS and repeat the med school mantra that there are no long-term issues to keep in mind in relation to PS.

You can find all the above information on the web. If you need or want my evidence of the above, you’re invited to message me with your email address. I have a list of some 1700 reports and other material which can be accessed via the web.

Why your doctor may delay diagnosing your baby’s Pyloric Stenosis

A member / friend in Facebook’s Pyloric Stenosis (“PS”) network messaged me:

After having a baby with PS I find it very difficult to understand why it takes so long for the doctors or specialist to diagnose it.  Just like to know your thoughts.  We were obviously extremely lucky.

Several other common problems around infant PS were raised and we’ll seek to address each of these in the following posts.

If like this parent your baby’s (or your) PS was recognised and treated promptly without ongoing problems, you are indeed lucky and will feel very grateful to all concerned.

parent painBut if you or your parents suffered to the extent of being traumatised by PS, you join a sizeable club!  Social forum sites such as BabyCenter (or –Centre), Facebook, MedHelp, Patient and Topix have allowed many thousands of parents and PSers to voice their unhappy experience of medical matters related to PS.

Well may we all wonder about the actual number of people with the problems on this parent’s mind.  For readers who are wondering, What are the problems? please read on…

Sadly not a few doctors (notably GPs and paediatricians) are arrogant and dismissive.
Parents who have done some solid homework on PS may be brushed off, those who have had a personal experience or previous baby with PS may be ignored, mothers who have nursed several earlier children are told their feeding technique is the problem, and first-time mothers with multiple PS cases in their family are told they are “nervous nellies”.

Despite key symptoms that seem to clearly confirm a PS diagnosis, doctors may well delay diagnosis, referral, and even ordering tests.  Rather they will “watch and wait” or prescribe medication and tell the parents to “come back after a week if symptoms persist”.  This sometimes continues for several weeks (yes!).

My evaluation?

  1. PS occurs in between 2 and 5 babies in every 1,000, so the several thousand stories I have read on the various online social media pages over more than 20 years are nevertheless a tiny proportion of the whole picture.  On the other hand, for every story that gets to (say) Facebook there would be several that don’t.
    A recent Danish study is the only large one I know of that’s been done to chart problems around PS, but this study only dealt with risk factors (“etiology”) and several elements narrowly related to the surgery (“morbidity”).
    I am so annoyed that nobody seems interested in doing a substantial professional study on many more of the questions involved with PS.  I’d so much like to run something with the Facebook network of several thousands but (a) it would be well-nigh impossible for a lay person to get enough participants, and (b) the results would not be statistically representative.  For useful data we’d have to have access to a less “slanted” sample based on hospital records – and then on that basis get enough participants.
  2. PS can develop very rapidly or very slowly, and some sometimes too mildly for surgery.  Many of the accounts on Facebook tell us of the operation occurring 4-6 weeks after the first signs of PS in a newborn, and that the baby was losing condition only in the last few weeks.  Others like me were diagnosed and sent to surgeon within days of birth.  Others again are diagnosed only at a dangerously late stage and after weeks of being fobbed off by medical professionals.
  3. arrogant doc5Doctors are increasingly trained in “the scientific method”.  This means that as a doctor you’ll ignore “circumstantial evidence” (like what people say and what you yourself can observe) and use only the evidence of imaging and blood tests.  And you delay serious consideration and diagnostic tests until you decide that running these tests justifies the cost, and then you wait for results.  I had my op in 1945, “the good old days” when (judging by the medical articles of the 1920s to 70s) the medical community usually and quite effectively went (a) by the physical signs which the parents gave the doctor and (b) what the doctor could observe: no soiled nappies, non-bilious projectile vomits, peristalsis, loss of weight and condition, dehydration, and “the pyloric olive”.
    Because of this trend towards being pedantically “scientific”, the cost factor, and the fear of complications and litigation, many doctors today try to avoid the op until it’s absolutely unavoidable.  The unstated attitude seems to be, “If the delayed diagnosis damages the infant, that won’t likely be evident for many years, by which time a link with the delay will be impossible to prove”.
  4. There are several organic (or organ-formation) bowel conditions of infancy that can at first be confused with PS.  This is especially so if the PS develops slowly and not many of the key signs of it have developed yet.  And then of course there are the more common non-organ-formation problems such as infection, reflux or GERD, and faulty feeding techniques.  Again, if the signs of PS are there, any delay could be damaging to the child and prolong the baby’s and the parents’ pain.
    And again: some PS never develops beyond a level mild enough to be treated with medicines, whether or not such treatment is effective in the long term.
  5. Sad to say (and judging by the evaluations by countless parents from all over the world) there must be far too many doctors who have a “god complex”.  This shows in their attitude to what the parents (and especially the mothers) report, even when they have done their homework and/or know their own and often their family history includes PS.
    Even worse, doctor friends have confirmed this to me, including one horrified parishioner who told me that on the first day of Med School (UNSW) his class was told that they now belonged to the upwardly mobile and indeed the elite of society.

Is it unreasonable to believe that much of the deep frustration and even trauma reported on Facebook is quite avoidable?  Of course not!

Mum w babeHow do troubled parents deal with this kind of situation?

  • Do your homework: google for the symptoms of PS and record the obviously significant things about your child: daily weight, input and output, indicative events, and general appearance and alertness.
  • Don’t consult your doctor alone: take your spouse, partner or other relative or friend for support, to convey your seriousness, and to remember and record what is said and done.
  • Don’t go with a preconceived idea of what you want, but don’t be snowed either.
  • Get a second opinion if necessary.
  • Go to the ER of the nearest children’s or general hospital if dissatisfied and if necessary don’t leave there until you sense it is right.

Always remember, you are your infant child’s only and best advocate.

Their future wellbeing may well be at stake.

Pyloric Stenosis’ Game-changer

The German Dr Conrad Ramstedt’s surgical remedy for infant pyloric stenosis was announced to the world at a medical conference and publication in 1912.

This event hardly affected the great majority of the human race, but it was of course rather significant for someone who underwent that surgery 33 years later to save his life just 10 days after his mother gave him birth.  And because pyloric stenosis (“PS”) affects between 3 and 5 babies in every thousand born in developed countries, and most of these are treated surgically, there are many people alive today because of Ramstedt’s discovery.

However, one only has to research the history of this condition and its treatment to realise that whilst the German doctor realised he had made a significant discovery, he was also the unwitting cause of trauma in at least some and perhaps many PS babies and their parents.  Let me explain…

In 1912, the medical treatment of PS babies was the rule but very risky, and almost half the infants died despite it.  Several surgical techniques were then being offered as an alternative for PS babies, but these were so drastic and severe on a tiny, malnourished and dehydrated baby that the great majority died of surgical shock, infection, and other related causes.  Most parents took their chances with the available medicines… and prayed.

RamstedtConrad operating

Dr Conrad Ramstedt operating

Dr Conrad Ramstedt’s accidental discovery in 1911 was published in October 1912 and represented a major breakthrough: see this post and this one.  The Ramstedt pyloromyotomy was rapidly adopted as the remedy of choice in most developed countries around the world, and in four decades after 1912, deaths from PS fell to almost nil in most countries.  However, even in the 1940s, some countries (including Great Britain) continued to report their PS mortality was still at 25%.  I have been shocked by how many mentions there are on the web of relatives dying of PS, even in the 1950s.  Despite all this, Ramstedt’s technique and better health standards in hospitals have done much to make death from PS most uncommon today.

How did the Ramstedt pyloromyotomy contribute to this?

Pic 13It made treating PS relatively easy and simple for surgeons, hospital staff, and parents. For surgeons the technique requires practice and care, but is essentially one of the simplest surgical procedures on the surgeries list.  The surgery usually ends the violent and deadly vomiting; although some continued vomiting and reflux occur quite often, it is fairly rare that an incomplete myotomy (division of the pyloric muscle) or the muscle’s redevelopment requires a repeat of the surgery.  So: anxious parents are greatly relieved, the surgeon immediately becomes a warrior-hero, and the baby quickly starts to make up for weight lost: I gather that my post-op photo is quite typical!

Apart from the great relief of all concerned, the Ramstedt pyloromyotomy saves pediatric ward staff and the bay’s parents from having to manage (or endure) weeks (and often two months) of medical treatment, with each of the sick baby’s feeds requiring medication be administered beforehand to a rigid schedule, milk having to be given slowly and carefully, daily weighing, and regular consultations with the hospital clinic or paediatrician.  Why put yourself through all that when surrendering your baby for just an hour or so to the gowned and skilled surgical staff produces what often seems like an instant fix?

Some babies are best treated surgically, and of the babies treated medically, up to 20% will not respond sufficiently well to avoid belated surgery.

Superman MD1On the other hand, almost all Ramstedt pyloromyotomies seem to be fully effective, certainly in the immediate sense.  And although the worldwide web includes many thousands of complaints and stories of a long list of troublesome ongoing effects from their PS or its surgery, it is just as clear that the vast majority of survivors and their parents are satisfied enough not to air their troubles.  The possible effects of the surgery are many and real, and sometimes severe, but many PS survivors report little or no gastric or abdominal discomfort, few or no problems with their scar or adhesions, and no trauma.  And this silence of the vast majority of PS patients has enabled most of the medical world to assure anxious and worried parents that “PS and its surgery will have no after-effects on your dear child”.

What I have written so far gives me some cause for concern, however.

Ramstedt’s discovery at once saved my life (and I’ve had more than 70 very good years so far), and it has also been responsible for the trauma I and not a few others have had to deal with (often chiefly in private) for most of our lives.

It was quite unintentional, but it is nevertheless true that Ramstedt’s surgical solution for PS effectively and inexorably moved the medical community’s interest away from perfecting the already (and still today) quite effective treatment of PS with cheap and simple medication and careful maternal nursing.  The Ramstedt pyloromyotomy is (as stated above) in itself what many surgeons call “elegant”: it is easy, quick and usually effective.  But until quite recently the surgery and what came with it could be very severe and traumatic on the baby and also on the parents, and it was associated with more (and more severe) risk factors than the medical alternative.

Thus the Ramstedt pyloromyotomy helped fuel the ascendancy of the power and prestige of the surgeon with which some of us are all too familiar today!  We must remember that specialist and high technology medical science has been very largely responsible for our rising health standards and life expectancies, but in fact PS is one of the maladies that can in most cases be brought under control by medical means and with surgery kept as a last resort.  In some developed countries, PS continues to be managed in this manner, and in many developing countries, medical treatment is far more affordable and widely available, and thus the first option.

So Ramstedt’s operation short-circuited interest in understanding and managing the causes, pathogenesis (biochemical development such as proposed by Dr Ian M Rogers) and even prevention of PS.

Whilst I am deeply grateful for the operation that saved my life and realise that in my case surgery may well have been the only responsible remedy, I have often wished that I could have been treated more gently, without a disfiguring scar, and without inflicting life-long trauma on my parents and me.

And in this wish I am not alone.

Why your doctor may delay diagnosing Pyloric Stenosis

A member / friend in Facebook’s Pyloric Stenosis (“PS”) network messaged me:

After having a baby with PS I find it very difficult to understand why it takes so long for the doctors or specialist to diagnose it.  Just like to know your thoughts.  We were obviously extremely lucky.

Several other common problems around infant PS were raised and we’ll seek to address each of these in the following posts.

If like this parent your baby’s (or your) PS was recognised and treated promptly without ongoing problems, you are indeed lucky and will feel very grateful to all concerned.

M820/0092But if you or your parents suffered to the extent of being traumatised by PS, you join a sizeable club!  Social forum sites such as Facebook, BabyCenter (or –Centre), MedHelp, and Topix have allowed many thousands of parents and PSers to voice their unhappy experience of medical matters related to PS.

Well may we all wonder about the actual number of people with the problems on this parent’s mind.  For readers who are wondering, What are the problems? please read on… Continue reading

Infant Surgery & PTSD – Links to Publications & Websites

Sometimes it is better not to know…

Some of those who owe their life to infant surgery in times past have become aware of the fact that safe and effective pediatric anesthesia and analgesia have only become almost generally used in developed countries in fairly recent years.

The medical mantra that “a baby does not feel, let alone remember pain” was widely believed and acted on in the medical world.  We can be thankful that many medical workers did nevertheless learn to work on infants using the available rudimentary anesthetic drugs and procedures. A powerful code of silence blanketed what was really happening and how widespread infant surgery without anesthesia was practised.

In 20 years of lay research and networking about this issue, I have yet to find a statistical report or journal article on the relevant facts and figures.  Understandably, parents were never told about the darker facts around their child’s operation, and those who dared to asked were most likely fobbed off – and certainly did not dare to share their concerns with their child in later years.

I have networked with an uncomfortable number of people who like me are grateful to be alive because of early surgery but have always been mystified by living with some of the symptoms of post-traumatic stress.

The medical mantras  about infants feeling and remembering pain were publicly challenged and steadily corrected only since 1987. I have written other posts here about this.

Here is a reading list for those who are interested in learning more about this matter.

Again: sometimes it is better not to know . . .

Inadequate pain management

New York Times – Researchers Warn on Anesthesia, Unsure of Risk to Children – http://www.nytimes.com/2015/02/26/health/researchers-call-for-more-study-of-anesthesia-risks-to-young-children.html (link)

Jill R Lawson, Standards of Practice and the pain of premature Infants – (pdf file incl additional articles) – http://www.recoveredscience.com/ROP_preemiepain.htm (link to Jill Lawson’s article only)

McGrath Patrick J – Science is not enough, The modern history of pediatric pain – Moderna historia dolor pediatrico.pdf – (file) – http://www.dolor.org.co/articulos/MOderna%20historia%20dolor%20pediatrico.pdf (link)

Pail’s Health Blog Nov 2010 – A Story of Babies in Pain and the Barbaric Malpractices of Medicine – http://www.theherbprof.com/blog/?p=66 (link)

Louis Tinnin, Awake and Paralyzed during Surgery – http://ezinearticles.com/?Awake-And-Paralyzed-During-Surgery&id=182472 (link)

Dvorsky, George, Why are so many Newborns still being denied Pain Relief? – http://gizmodo.com/why-are-so-many-newborns-still-being-denied-pain-relief-1755495866 (link)

 

Infant Memory

Chamberlain David B – CV & publications.pdf – (file)

Website – Birth Psychology – A Bibliography of Dr David B Chamberlain’s writings – https://birthpsychology.com/journals/volume-28-issue-4/chamberlain-bibliography (link)

David B Chamberlain, Babies are Conscious – (file)

David B Chamberlain, Babies Don’t Feel Pain – a Century of Denial in Medicine http://www.nocirc.org/symposia/second/chamberlain.html – (link)

Levine, Peter A, Waking the Tiger – Healing Trauma, North Atlantic Books, 1997 (book title)

Van der Kolk, Bessel, The Body Keeps the Score – (book & summary article title) http://www.franweiss.com/pdfs/sensorimotor_vanderkolk_1994.pdf (link)

Van der Kolk, Bessel, Brain, Mind and Body in the Healing of Trauma – http://www.shrinkrapradio.com/436.pdf (link)

Van der Kolk, Bessel, Developmental Trauma Disorder – (book & summary article title) http://www.traumacenter.org/products/pdf_files/Preprint_Dev_Trauma_Disorder.pdf (link)

Van der Kolk, Bessel, The Limits of Talk – http://www.traumacenter.org/products/pdf_files/networker.pdf (link)

 

PTSD from Infant Trauma

K J S Anand & P R Hickey, Pain and its Effects in the Human Neonate and Fetus – http://www.cirp.org/library/pain/anand/ (link)

The New York Times, 24 Nov 1987, Philip M Boffey, Infants’ Sense of Pain Finally Recognized – http://www.nytimes.com/1987/11/24/science/infants-sense-of-pain-is-recognized-finally.html (link)

The New York Times Magazine, 10 Feb 2008, Annie Murphy Paul, The First Ache, http://www.nytimes.com/2008/02/10/magazine/10Fetal-t.html?_r=1&ex=12 (link)

Monell, Terry – When Pediatric Surgery causes Permanent Damage.docx (file)

Dr Louis Tinnin – Infant Surgery without Anesthesia 130707.docx (file) – https://ltinnin.wordpress.com/ and https://ltinnin.wordpress.com/2010/12/30/infant-surgery-without-anesthesia/  (link)

Wendy P Williams – Are Your Symptoms due to Infant Surgical Trauma? – http://restoryyourlife.com/ptsd-post-traumatic-stress-disorder-dr-louis-tinnin-infant-surgery-without-anesthesia-pyloric-stenosis/ (link)

Wendy P Williams – Ten things to remember about pre-verbal Infant Trauma – http://restoryyourlife.com/preverbal-infant-trauma-preverbal-memory-emotions-sensations-breath-anxiety/ (link)

National Institute of Mental Health (USA) – comprehensive introductory brochure on PTSD – https://infocenter.nimh.nih.gov/nimh/product/Post-Traumatic-Stress-Disorder/QF%2016-6388 (link to brochure)

Ten things People with PTSD-related Dissociation should know – http://healthiest.pw/10-things-people-with-ptsd-related-dissociation-should-know/ (link)

 

Personal accounts

Kyle Elizabeth Freeman – Blogger at “Gutsy Beautiful Complicated”, Childhood Medical Trauma – 36 Years Later – https://gutsybeautifulcomplicated.com/2012/11/03/coming-to-terms-with-trauma-thirty-nine-years-later/kyle.elizabeth.freeman@gmail.com

 

N B – Chamberlain, Dvorsky, Van der Kolk and some others listed here have other material online and/or for sale

 

N B – this List is a work in progress