Category Archives: Infant Surgery

Some of the many conditions that lead to babies having surgery.

Brain damage after Infant Pyloric Stenosis

Patient & doctor03“If my baby has had pyloric stenosis (“PS”) and had surgery to remedy it, will there be any longer term after-effects?”

Most medical professionals will brush this parent concern away: “No, once your baby recovers, you and your little one can put this episode completely behind you!”

If only this were true…

We must all understand this:

Surgeons’ competence and interest are in the immediate surgical “fix”, paediatricians may follow the infant’s story for a few months, but very little has been done to follow these “Py-children’s” stories over 10, 20 or more years.

However, the very few studies that have been done have identified several possible hazards. This blogsite has dealt with most of the most significant ones:

  • continuing gastro-intestinal (“GI”) instability presenting as GERD or reflux, as IBS, or as a tendency to vomit (in over 50% of PS survivors as one study found) – all due to the high gastric acidity levels which helped trigger the PS in infancy and remains high lifelong in many or even most PS survivors;
  • in a substantial minority (estimated 5-15%) of cases adhesions develop as a result of the PS surgery and will cause pain and distress to a significant extent;
  • a minority of PS survivors take many years to come to terms psychologically and emotionally with their surgical scar – acknowledged as a lifesaver but growing more obvious with the years, in which they had no say, and which some parents decline to talk about;
  • a very small number of older PS survivors have gone public about struggling with symptoms of PTSD diagnosed as resulting from the rigours of older style infant surgery, when many surgeons believed there was no need for anesthesia (“babies don’t have a memory”) and when long maternal separation was part of many hospital routines.
  • There is at least one other area of possibly long-term damage that can come with PS and infant surgery.  This is damage to the brain from starvation resulting from delayed diagnosis of PS, and/or repeated anesthesia, especially when the PS came with another hazardous condition of infancy.

This is the subject of this post.

Here follow some of the facts that have been established by medical research and reporting. I have included a link for every point noted but have collected many more reports. Readers are free to ask for my full reference list; contact me by email via the “About me” or “About this blog” tabs at the top of the page.

Fact 1:  Single use anesthesia probably causes no long-term damage

 A 2016 report clearly established that single and simple surgery for hernia repair resulted in no brain damage at 36 and 48 months.  This report has been widely quoted to reassure worried parents.  Lengthy or repeated anesthesia for more complex procedures was found to be damaging.

The anesthesia used in the typical pyloromyotomy (to stop PS) is part of one fairly quick and simple surgical procedure.  However, almost all PS surgery occurs in the first weeks of an infant’s life.  I have not found any study of the effect of a single short anesthetic episode on the brain of a very young infant.

So repeated surgery using general anaesthetic certainly does affect the infant brain.  Prevailing opinion is that single use does not affect a baby, but the studies “establishing” this did not involve newborns but children at 3 and 4 years old!  In matters of life and death general anaesthesia is a known and acceptable hazard.  But contrary to the prevailing opinion of the medical work, most PS babies can quite easily be treated with medication. And it is in many countries. More targeted studies are needed.

Fact 2:  PS-related malnutrition does have long-term consequences

 

A baby’s PS episode can easily result in significant starvation, as prompt and accurate diagnosis is sometimes difficult and sometimes suffers from negligence, lack of the required skills or unnecessary delay.  A baby is developing rapidly and is wired to need regular feeding: this is especially true of the human brain.

Starvation and resulting malnourishment are very real hazards with PS, and several studies including an Australian one published in 2018 have shown that PS infants and children have significantly higher levels of brain damage than control groups.  The cognitive (thinking, reasoning, remembering, imagining, or learning words), receptive language (the ability to understand information), and motor skills (the precise control of muscles in order to perform a specific act, whether in the classroom, in sports, or personal clumsiness) scores are most clearly affected.

I cannot but link these findings with the observation that several of my skills in these areas are clearly below those of my four siblings. This is not to deny that a PS survivor can never be a top athlete, accountant or academic – all I observe here can be questioned… but my lifelong observations remain!

A 1973 Scandinavian study found links between PS-caused starvation and below normal social and communication skills and described them as pervasive developmental disorders (PDD). It found that parents could recognise the symptoms before the age of 3 years.

But it added that if recognised early and given special remedial support, children with these difficulties will usually overcome the worst of their handicaps.

Fact 3:  There is a possible link between infant PS and Autism Spectrum Disorders (ASD).

A large 2009 study conducted in Western Australia over 15 years found that PS babies did not have a higher incidence of ASD than a control group, whereas babies with many other birth defects did.  But it mentioned that several other studies had found that infant PS also occurred significantly more often in children who were also diagnosed with ASD.

autism01Another large study was reported in 2009: the Autism Spectrum Disorders Report, which is also readily available online.  Like the WA Report, it found links between ASD and many categories of birth disorders, but not with PS.

As with the effects of anesthesia on the fast developing brain, the medical world is not agreed on this subject.  This clearly is one of the areas in which more research (read: more funds) is needed – but of course there are many even more serious conditions that are crying out for more interest and funds for research. It has not been established that there is a common cause of IHPS and ASD (such as a higher incidence of defective genes and/or environmental factors in these children) or that one condition actually triggers the other.

Conclusion:  Greater awareness and more studies are very much needed

My reading list on this subject area reflects a telling lack of clarity and agreement, and this is far from the only subject area of infant PS on which studies have arrived at conflicting and sometimes troubling conclusions.

In 2013, the Journal of Neonatal Surgery published a widely disseminated overview article marking the centenary of German doctor Conrad Ramstedt’s publication of his discovery of and success with the PS surgical technique that quickly became and has remained the standard way of dealing with infant PS.  Dr Raveenthiran Venkatachalam’s remark (as “Athena”) on the subject of this post is worth including here:

Dramatic relief of symptoms following pyloromyotomy has lured many pediatric surgeons to declare a cure after one or two follow-up visits. Long term results are generally presumed to be good rather than proved by evidences. Two recent papers question this com-mon assumption. Using Baylay scales, Walker et al [21] assessed neurological development of 52 infants with HPS and 211 healthy infants at 1 year of age. Cognitive, receptive language and motor scores were significantly lower in HPS infants than in controls. It is unclear whether this adverse outcome is attributable to the dis-ease process or to anesthesia administered during surgery. Although further studies are needed to conclude whether this difference is of any practical significance, the findings of this study are certainly a source of concern. Saps and Bonilla [22], in a case-control study, studied 100 HPS patients and 91 controls in their late childhood. The mean follow-up period was 7.2 years. Nearly 25% of those who underwent pyloromyotomy in infancy developed chronic abdominal pain at a later age; while only 6% of the controls were so. Irritable bowel syndrome, functional dyspepsia and functional abdominal pain were more common in HPS group than in control group. Athena considers these two studies as eye-openers necessitating long-term follow-up of HPS infants.

What most doctors seem to remember about IHPS from their med school classes and textbooks is necessarily basic and general.  If more is said, it’ll be even more easily forgotten.  Medical science is such a huge body of information.  Although PS is quite common, most medical professionals will see very few if any cases.

We can be thankful that in general PS and much infant surgery today have no major ongoing consequences. If there were any life-threatening conditions or obvious disabilities, the medical world would know about this and PS parents would not be silent.

One of the most traumatic events new parents can experience is finding their baby vomitting uncontrollably, forcing them to submit their newborn to life-saving surgery.  We can be thankful that almost all babies and their parents nowadays survive pyloric stenosis (“PS”).

Once that crisis is behind them parents’ next question is inevitably: will this condition or surgery affect our child’s future?  Reliable and informative answers to this question remain challenging and usually unreliable – but few doctors, parents, and survivors seem to be aware of this.

Because of this blogs like this one and social media discussions will continue to advocate for far greater awareness of the facts.

See also my post: Is a sick and starving baby affected for life?

Pregnancy post-Pyloric Stenosis

One of the most visited posts on this blogsite deals with how having had infant Pyloric Stenosis (“PS”) affects pregnancy.

This question must be answered by looking at several aspects –

  • Will the scar hold?
  • What do I need to know about adhesions?
  • Could I pass on my PS to my baby?
  • Reliving the past – and the trauma

Will my scar hold?

The short answer is Yes!

Our skin varies, as do our stretch marks, as do our scars.  Your scar may stretch and it may change in appearance, perhaps permanently, perhaps not.  Or it may stay much the same, which will put extra stress on the surrounding skin and underlying tissue of the stretching abdominal wall.  This may create a different pattern of striae (stretch marks caused by the dermis or outer tissue tearing) from the usual.  So there are several unpredictable possibilities, but one thing does not happen: your scar will not rupture.

When a surgical wound is healing it can rupture and need repair. Inadequate repair of the underlying tissue can cause a post-operative hernia which will sometimes heal without further intervention, sometimes not.

C 16w 2010But once scar tissue has matured (losing its redness takes a year or two) it is harder and tougher than normal tissue and far less likely to rupture than the surrounding tissue.  The stretching of pregnancy may cause itching, pain, or a tearing feeling, especially in the scarred area, but this won’t affect your baby, womb, or pregnancy, and your doctor can promise you this!

This is how one mother answered this question –

My niece has similarities to your situation, here is what happened with her.

Nothing bad happened to her baby and he was able to grow just fine – your scars will not affect your bub.

As her baby grew it stretched her scars causing shooting pains, the pains were only every now and then.  They only caused her to worry because she thought it may not be the scars and maybe it was something wrong with her baby.

Her scars are right through stretching right down the middle of her stomach in a T like form: she had an operation when she was born and then again when she was 5 and her scars are attached to her muscles.  Her stomach also didn’t grow very big compared to most pregnancies, so if your belly gets bigger than hers it may cause a bit more pain than ‘every now and then’ (but that’s just a guess based on no medical knowledge).

Hope this sets your mind at ease, both you and your baby will be fine. (– anon)

What do I need to know about adhesions?

All abdominal surgery triggers the growth of adhesions, a web like formation of tough scar tissue that develops between areas that have been exposed, cut or otherwise affected by the operation.  The organs inside our abdomen don’t like the fresh air and drying that occur during open surgery, nor the gas that’s used to inflate the abdomen for keyhole surgery.

A laparoscopic image of adhesions between the right diaphragm and liver

Everybody develops adhesions after surgery: these link different abdominal organs (e.g. the stomach and gall bladder or liver) or they link one or more of these with the inside of the abdominal wall.  This is noticed in only a minority of cases, but when adhesions make their presence known it can be very troublesome, causing pain and snaring, choking or otherwise disrupting the normal working of our abdominal organs in the affected area.  Adhesions are hard to treat, as surgery to remove them in affected people will inevitably trigger the growth of more of these nasty webs. I have written about adhesions several times – use the Categories or Tags search boxes to find them or go to Dr Google!

Pregnancy may make a woman with PS in her history aware of adhesions that had not troubled her before. She may feel pain or tearing in the region of her scar as her body changes; although this is uncomfortable it is a normal process and not hazardous, and will probably be a temporary although added discomfort of pregnancy.

Because each pregnancy has its own unique character in lots of ways, the pain and tearing sensations of adhesions can come with any but not usually all of her pregnancies.

The best advice for dealing with adhesion and scar pain and itching is what is usually recommended for pregnancy anyway: lots of lotion and lots of massage – which will help some and not others. The end result of the 9 months will we trust be well worth the discomfort and pain.

This is how one mother answered this question –

I am a 36 year old female, with 3 children.  I had my pyloric stenosis operation in 1974, at 6 weeks old.  My scar is now about 5 inches long, a cm wide and has 4 ‘stitch’ marks down either side.  It sits off centre to my right side, vertically.  And without a doubt it is attached to my abdomen at the bottom of the scar!  My mum said it was just about two inches long when first done.

Throughout childhood I complained that my ‘scar’ hurt and this was dismissed by the GP as part of growing!  At 18 I had my first pregnancy, and had a dip in my stomach as it swelled, with a feeling I can only compare to being jabbed with a pin.  It wasn’t so bad with my second child a year later, although the dip was there as stomach grew.  I had my third and last pregnancy at 33 years old, and my last baby was bigger than first two.

I collapsed with severe pain in my middle of right side 2½ years ago, and initially was diagnosed with kidney stones, but the urologist did not think the stones were big enough to cause the pain I was in.  (They were smaller than grain of rice.)  I am now awaiting an endoscopy with a gastroenterologist to see if I may have adhesions.

My scar is definitely pulling upwards towards my right ribs and I am rather unhappy that I have had to suffer for this long to get any answers!  I have been back and forwards between the specialists 4 times now as neither would pin-point pain, but if I were able to ‘operate’ on myself, I am convinced I could put my finger exactly where my pain is!  The pain is at best mild, but can get worse, usually 30-45 mins after eating.  It is constant, but I have learnt to recognise, offset and control it with painkillers.

I have been lucky that none of my children inherited the pyloric stenosis.  I am convinced that my life time of constant stomach problems, cramps, constipation, stabbing pains, nausea, etc etc has been a result of this condition, and wouldn’t wish it on anyone!  Good luck to you all on getting it sorted, and insist on help if your child continues to suffer. (– Kaz)

Could I pass on my PS to my baby?

This is indeed quite possible, and because of the quirkiness of genetics a mother who has a PS history is more likely to have a Py-baby than a father.  It is well-known that 4-5 boys have PS to every girl with it, but part of this means that those girls who do have it carry stronger PS-carrying genes.  Not nice…

The risk is unpredictable, as infant PS is “multi-factorial” and can be caused by non-genetic factors – labelled “environmental” in the medical world, although PS is never caused by what most of us think of as “the environment”!  A woman who belongs to a family tree with another (possible) case of PS is at higher risk than one with “one-of” PS.  So the likelihood of a PS mother having a PS baby varies from almost nil to about 20% according to the several studies that are freely available online, and some few mothers have reported passing on their PS to most or all of their offspring – up to 4 children in a few cases I have on file!

The key thing to remember is: everyone (mother or father) who has had PS can and should be better prepared to give prompt and the best possible care for their new-born Py-baby!

This is how one website answered this question –

  • Pyloric stenosis is the most common infant surgery in the United States after circumcision.
  • Pyloric stenosis reports in the United States have shown as few as 1 case per 3,000-4,000 live births to as many as 8.2-12 cases per 1,000 live births.
  • In general, pyloric stenosis affects approximately three out of every 1,000 infants.
  • If a child with pyloric stenosis is female:
    the likelihood of having a future son with pyloric stenosis is one in five.
    the likelihood of having a future daughter with pyloric stenosis is one in 14.
  • If a child with pyloric stenosis is male:
    the likelihood of having a future son with pyloric stenosis is one in 20.
    the likelihood of having a future daughter with pyloric stenosis is one in 40-50.

Reliving the past – and the guilt and the trauma

Sadly you won’t find this information on the PS-pages of our hospitals’ and paediatricians’ websites …

But having followed what not a few new parents have reported on internet social forums such as BabyCenter, Facebook, MedHelp, Patient, and Reddit, it is abundantly clear that some who have PS in their story struggle with guilt and PTSD, although thankfully not in a life-threatening form.  How many and how severely people are affected in this way is impossible to estimate, as this matter has not been given any academic or statistical study that I have seen.

The now adult Py-baby may find during pregnancy that they (father as well as mother) are painfully reliving their own past, fearful of passing their PS on to their new baby.  It is now known that the fears and deep emotions that many parents of a PS baby experience and convey to their growing child in story and emotionally can affect the in many ways exciting months leading up to the birth of a new person.  In times past, the traumatised parents would keep their story to themselves, which will often affect their child even more.  Sensitive and wise openness is far preferable to the old-time “stiff upper lip”.

Several things will help –

While most couples awaiting parenthood have never heard of PS, those who “own” their PS story will be far, far, far better prepared.  All infant surgery runs a high risk of a chain of unhappy events, including:

  • the horror of an eagerly awaited newborn infant vomiting itself to death;
  • insensitive, even haughty doctors who dismiss the fears and homework of new parents and draw out diagnosing their infant’s problem;
  • the hazards of anesthesia and surgery, increased in the very young;
  • post-operative complications and frustrations;
  • worries about long-term effects, usually brushed off by doctors but well-founded despite this.

Having recognised and to some extent worked through most of the fears and uncertainties is a great bonus.

Parents with a PS history also need to face the possibility of misgivings and guilt feelings that won’t be justified and will be unproductive, but may be very real and therefore also need to be processed.

As well as the above reasons, PS survivor parents preparing for the birth of a baby may be stressed by the possibility of bringing another “imperfect and damaged person” into the world, and by memories of the utter powerlessness inevitably associated with submitting one’s long-awaited newborn to a medical team and their procedures.

But PS parents will also know better than other parents that despite the above, PS is recognised throughout the medical world as the least un-desirable of all the conditions of infancy that usually require surgery.  The surgery by today’s standards in minor and routine, and almost always quickly effective. Any immediate after-effects will usually clear up within weeks or months, and any long-term after-effects (although usually not acknowledged) are manageable and never life-threatening.

The bottom line: I survived, and my baby will too!

Here follow four people’s observations on this subject area –

I am not so much nervous about labor as I am about being the best mother I can be and being the mother she needs.  I have a lot going through my mind right now.  My main concern is how horrible I will feel if she inherits pyloric stenosis from me.  Because of it I had to have surgery at 3 weeks old, it caused me to be so weak from not enough nutrients that I no longer had the energy to cry.  I am terrified of having to go through what my mom went through.  I keep trying to tell myself that she will be fine and everything will work out, but I am still scared... (– Jessica)

I used to work on a children’s gastrointestinal ward in London and would often see this. It’s a small op as far as an adult is concerned, but for any mum and little quite major. Make sure any questions you have going round in your head now, you write down. Make sure you ask all you want to ask, don’t be afraid as no question is silly, and they would rather explain to you what’s happening than have you confused and worried. (– Rachel)

I almost died before I was even born.  After my mother’s water broke and she was in labor for several hours, I had a bowel movement inside the womb – gross! – and the doctor said that was sign that I was in distress and not getting any oxygen so he performed an emergency C-section.

Then after I was fed for the first time I vomited it right back up.  And I kept vomiting after every feeding. I was diagnosed with pyloric stenosis… So I had to have surgery when I was just a few days old.

So my parents almost lost me twice before I was even a week old, and it’s easy for me to see why they – my mother especially – became overprotective parents.  And they passed that overprotectiveness on to me.  Even though I don’t have or want kids of my own, whenever I’m around kids I’m hyperaware of what’s going on around them.

I grew up knowing about all of the horrible things that can happen to children – rape, kidnapping, murder, etc. And it wasn’t just “stranger danger either. ( – Holly)

I had the surgery as an infant and asked in my first pregnancy if my baby could have the same problem.  I was basically laughed at so I never thought of it again.  I was definitely agitated over that because I would have always watched out for it.  It was hard just thinking about my baby having an IV/surgery and I really broke down when we got to the children’s part of the hospital and I saw the crib/bed.  After that though I was fine.  My DH and I held him for 2 days straight – we took shifts at night.  The hospital was so thorough and made us feel like Jacob was in great hands. (– anon)

Recommended: my previous post on this subject –  https://whatwewishwedknown.wordpress.com/2017/05/15/an-abdominal-scar-and-pregnancy/

 

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.

PI 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