Tag Archives: parent role

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.

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Pyloric stenosis – untangling the emotional baggage

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

1940s surgery looked and was different from today's

1940s surgery looked and was different from today’s

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

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

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

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

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

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

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

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

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

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

How did “family time” get me thinking?

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

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

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

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

Pyloric stenosis hits new parents hard

Bear with me as I again reflect on the horrible pain parents endure when their newborn pride-and-joy –

  • becomes horribly unwell, unable to keep down any nourishment,
  • loses instead of gaining weight and condition,
  • causes them to find (as many do) that their usually trusty doctor n be terribly condescending and dismissive (“typically anxious  new parents,” and “try another formula”), only to be told by another voice in the medical machine, “I’m sorry but your baby is close to death, you should have brought him / her in much earlier… you’ll have to submit your baby for surgery.”

A few days ago my family marked the centenary of my father’s birth, and I dug up some of the 1945-vintage documents he left me, including (1) his receipt for paying somebody to announce my birth to the town notables, and (2) a short letter he wrote to his parents on the day after my birth.  Both are clear evidence of the extreme joy, excitement and pride my parents felt after many years of waiting to start a family.

Baby unhappy01What happened immediately after that has been wiped off the record: I have no documents, no letters and no stories about my pyloric stenosis (PS).  It must have been only a day or so after these carefully conserved sheets of paper were written that I started to throw back everything my frightened mother gave me.  Ten days after my birth their tiny frail baby was tied down on a large operating table in a nearby city hospital.

After many years I can well understand that my parents did all they could to delete the PS page of my story from their lives.  But their doing this did not help me to come to terms with my story, nor my understanding and managing the distress of PTSD that resulted.

What has helped me understand and accept my parents’ pain has been what others have written about the intensity of what they endured with their baby’s sudden and violent sickness followed by surgery.

One such account was written early in 2013 by a British father who like my father is a church pastor and who like my parents went through PS quite unexpectedly and with their first child, also a boy.  Under a powerful title, When your son goes under the knife – a dad’s experience, Roy Summers wrote –

Child under the knifeIt is one thing to be in hospital for a personal operation as an adult, but quite a different experience as a parent of a child.  As a general rule my family of six have enjoyed remarkably good health, for which we thank God.  We had an early scare with our firstborn, who had pyloric stenosis as a baby and was only a shade away from death; but apart from the normal scrapes of family life the Lord has granted good health.

Roy Summers then reflected on what he has learnt from a more recent experience, when another of his sons suffered a ruptured appendix and complications after the operation.  I recommend going to Roy Summers’ post and reading it in full, as I regard it as portraying a thoroughly human response to inner pain and beautifully integrated with Christian faith and pastoral care.  I would like to pass on the main headings to whet the reader’s interest in what Roy and his wife Yvonne learnt.

  • The last kiss?
  • Trust – placed Where?
  • Why was the first operation not “successful”?
  • How often and passionately do we pray the more important prayers?
  • Why didn’t God answer a little boy’s prayers?
  • Thank you for the medicine

Roy goes a long way beyond merely writing (as many such parents do), “This was the worst experience I have ever had!”  I am grateful to him for this.

parent-talking-to-childAlthough many of the details of this father’s experience and reflections are related to his son’s appendicitis and peritonitis operation and are therefore somewhat different from those he would have had when his first son had PS, the emotions, questions, Christian response and character-shaping issues are exactly the same.

 

When pyloric stenosis is hard to diagnose

Scared_DoctorA 1975 article on the difficulty of diagnosing some cases of infant pyloric stenosis (“PS”) underlined the sympathy I have for medical doctors: these important professionals have to be across thousands of symptoms and medical conditions, on good days and less easy ones, and also across the latest findings and journal reports… and up to dealing with upset or just plain difficult people, and with their receptionists and colleagues.  Is it any wonder that we, the general public, tell and retell many GP and MD stories that are not all that flash?

Mum w baby01This blogsite includes several posts about this, warning parents of sick children to –
1) do their own homework,
2) be your child’s best and well-informed advocate,
3) take somebody supportive if needed to what may be a difficult consultation,
4) stand your ground if it is solid, and
5) if all else fails, get a second opinion, go to the hospital Emergency Department and find another doctor.

Far too often I have quoted or commented on the stories of some parents of PS babies are outrageously out of order.  See the “Topic Categories” box (upper right of this page) to find some of the stories of parents and PS patients (at the list’s bottom).

Having mentioned the sad and bad stories again, I have also written about the complexity of diagnosing some cases of PS (see “Pyloric Stenosis – Diagnosis” in the Topic Categories).  The 1975 report I mentioned above deals with four unusual but not abnormal PS cases, and this report has told me more than it actually says.  Click the link above to read the entire and (to me at least) interesting 1975 report which I will overview and comment on here.

It is stated of 3 of the 4 babies that their PS showed itself quite clearly within two weeks of their birth.  All 4 were eventually operated on – but not until well after the normal “window” of “3 days to 3 months” for the majority diagnosis and treatment of PS.  As I understood the report, the youngest was almost 4 months and the oldest 9½ months at surgery.  What happened?

Q mark1All four babies showed inconsistent and unusual symptoms of PS –

  • their vomiting was unusual, sometimes subsiding or intermittent,
  • although all failed to thrive and gain weight normally, they never fell below their birth weight;
  • gastric peristalsis (muscle movement across the upper belly after feeding) was often weak or absent and didn’t cause the usual cramping, pain or distress;
  • the swollen pylorus could not always be felt (“palpated”) and did not always show clearly on x-rays.

ponderOn the other hand –

  • their vomit was bile free, showing their stomachs were blocked,
  • changing or thickening their milk or formula and keeping them upright after feeding did nothing to remedy their condition, and
  • medication with antispasmodics to rule out pylorospasm (in which the pylorus spasms but does not thicken and block the passage *) and confirm gastric obstruction brought no relief.

Yes, my complaint about doctors’ poor attitude and diagnoses has been often and clearly stated on this blog.  But in the light of this report it should be clear that –

1                    When there is a family history of PS, when parents are experienced, when they show they have done their homework, and when several of the symptoms of PS are clearly present, a wise doctor will agree to immediate further tests, with good reason (see below) although this is something that is commonly resisted.

2                    When there are some symptoms suggesting PS but not enough evidence for a diagnosis of PS or another condition it would also seem sensible to run further tests.

3                    When no clear diagnosis of PS is possible it is necessary to eliminate other abdominal conditions including pylorospasm from the doctor’s considerations.  This may be done by changing the feeding regime (as mentioned above), trying an anti-spasmodic medication, conducting further tests, and/or by waiting for a week or so and then if necessary repeating some of the tests.

4                    Waiting will be difficult for anxious parents of a small baby who is losing weight and condition.  A good doctor will understand this and convey empathy as well as working through what such parents may need to watch out for and do in the interim if necessary.

Father compassion01e5                    Again, if the doctor is not supportive and seems negligent and especially when the baby is clearly losing condition (losing significant weight, not soiling diapers / nappies and not urinating, appears drowsy and is sleeping excessively) it is high time to bypass the family doctor or paediatrician and insist on the local hospital taking responsibility – and urgently.

What eventually did help the four babies in the report was the comparison of their earlier with more recent x-rays: there are several typical radiological (x-ray) signs of PS, all of which are not always evident or clear from one series of images, but do become so by comparisons.

What did I learn?

1                    The report shows clearly that when it is not possible to diagnose PS with confidence (and what parent, patient or doctor wants unnecessary surgery or medication?) a careful process of tests, management and observation will clarify the real problem.

2                    PS manifests itself and can develop in a variety of ways.  Although most cases arise along textbook lines, there are occasionally exceptions to the “rules”.  Case 3 (a 7 month old girl) is the clearest example of this: her case should be read in full by interested readers.  Her PS was evident at 10 days but seemed insufficiently developed at her first pyloromyotomy at the age 7 months and she needed a second operation at 9½ months when a fully developed PS was found.

3                    It will be clear that these four cases were different from other groups of PS sufferers, including the “late onset” infants who first show PS symptoms after age 3 months, and the mild PS cases who are not considered as needing surgery, perhaps treated with medication, and sometimes continue to live with the signs of mild PS, to the extent that some of them seek a pyloromyotomy later in their childhood, teenage or adult years.  There are numerous stories from and about such PS sufferers on the web.

4                    Once again there was a loud silence in this 1975 report about the medical treatment alternative for PS babies.  This blog has often urged that medical management of PS be tried before surgery is even considered.  The “Topic Categories” box (top right of page, “Pyloric stenosis – Medical treatment”) will give the links.  Medical treatment of PS is of course slower to take effect than surgery, but it controls the condition in 70-90% of cases (depending on which report you read), makes good use of the time lag that is necessary to eliminate the possible diagnosis of pylorospasm, can always be set aside for surgery when necessary, and is non-life-threatening and non-traumatic for both baby and parents.

M820/00925                    Parents can learn from this 1975 report and (I trust) my post about it.  It underlines the need for parents to be as well-informed as they can be: to be their baby’s best possible advocate, they will know about and understand the symptoms of PS, will ensure that their medical consultants are exercising their duty of care, and will be willing to “change horses” if necessary.
This may sound presumptuous and “a big ask” of distressed parents, but as I have explained, it is far from impossible, especially with the help of a suitable supportive family member or friend.
Realize that the life of your little one may be at stake.
Today, medication, anesthesia and infant surgery for PS are almost always safe.  But from what appears on the web, the negligent delay, diagnosis and treatment of PS are the most frequent killers of PS infants.

*  What is the difference between pyloric stenosis and pylorospasm?
Narrowing of the pyloric canal is a common finding in infants with chronic vomiting, and it is most often due to pylorospasm.  In such cases, there is no thickening and hardening (hypertrophy) of the pyloric passage, causing it to narrow (“stenose”), and the spasms (contractions) of the pyloric muscle can be treated by modifying the feeding technique and/or with an anti-spasmodic drug.
When the vomiting persists, a question arises as to whether it is due to pyloric stenosis.  Distinguishing between the two conditions is difficult but important, for while spasm can be treated medically, true stenosis (physical narrowing) may require a carefully managed course of medication or surgical intervention.
Some believe that surgery is the only remedy for true pyloric stenosis and that all cases that respond to medication only had pylorospasm; this has been rejected in the light of studies of diagnosis and treatment.

 

Pyloric stenosis – surgery or medical therapy? (3)

Egg on my face!

After years of finding, digesting and archiving web-based reports on infant pyloric stenosis (“PS”) I have often commented on the virtual absence of any mention, let alone careful consideration, of the medical treatment alternative for PS.  It is certainly so that based on what I have found, throughout the world the Ramstedt operation is now recommended and absolutely dominant.

However, in the two weeks since writing again about the medical therapy alternative, I have found several articles that do give at least some details more details of this alternative, although usually in passing and hardly positive.

baby trusting1I mentioned one newly found source in the previous post.

This last week I discovered three more reports.

One was a 2006 report in French from Benin in West Africa about the value of the medical atropine treatment in developing countries where safe surgery is unlikely even if it’s available. It reported two successful cases of this.  It also referred to supportive reports from India, Japan, Serbia and other countries which I have mentioned in previous posts.

Another article was in a 2010 journal for nurse practitioners (NPs) and doctors’ assistants (PAs): it comes with the promising title, Pyloric stenosis: exploring all the options.  The article is modest (presumably due to its intended readers) but true to its title: it does cover the subject of PS in a comprehensive overview, including a survey of many of the possible ways of treating PS, including medical treatment with atropine sulfate.

This is how the writers deal with the hardly ever mentioned medical path of treating PS –

Despite poor outcomes without surgery,alternatives are necessary for patients who are not well enough to have surgery, who have limited access to surgery or whose family refuses surgery.  One alternative is the use of atropine sulfate as an antispasmodic agent to prevent peristalsis in the stomach.  It is administered intravenously at 0.01 mg/kg six times a day, 5 minutes before feeding, and the dose is increased daily until 150 mL/kg per day is achieved without emesis.  When a patient’s vomiting has subsided and steady weight gain has been achieved, atropine can be decreased in three steps of 0.12, 0.06 and 0.03 mg/kg per day.  Skilled nursing care is required to carry out these repeated injections.

Even with a longer hospital stay, no significant difference exists in medical cost between atropine and surgery. Disadvantages of IV atropine therapy include length of hospital stay and the necessity of continuing oral atropine after discharge. The long-term effects of atropine therapy on pyloric motility need to be investigated to clarify the value of medical treatment compared with surgical treatment.

For references to what is reported here, please use the link to read the full article.

Choice01I am grateful that this article does acknowledge that there is a place to consider atropine therapy.  I have posted a survey of the possible long-term effects of treating PS both surgical and medically.  Briefly here, many readers will feel that medical treatment should be the case in the light of –
1) the long-term physical effects of infant surgery which are rarely acknowledged although all-too-real for those affected; I have written about adhesions, GERD and IBS;
2) the various long-term emotional effects on many of the scarring from infant surgery;
3) the fact that medical treatment is non-invasive and cannot cause shock or trauma.

Here are the authors’ conclusions –

Mum w baby01It is important for PAs and NPs seeing infant patients to know what to look for during examination and, for definitive cases, to educate the family about the therapeutic options.  Surgical success rates approach 100%, and with the decreased length of hospital stay, decreased time to first feeding, lower surgical stress, potentially decreased surgical time and better long-term cosmesis, laparoscopic pyloromyotomy might be the best option.  For patients in whom surgery is contraindicated or impractical, atropine sulfate therapy shows the greatest potential. 

The final reference of interest here is a letter to a medical journal which has been in my files but which I had overlooked.  This 1991 letter reports on 19 years of solid and positive experience with medical PS treatment in a British hospital. Two surgeons report on 62 PS babies, 7 of whom were successfully treated medically. They also affirm the work and writings of an earlier and well-known British pediatric surgeon, Dr Jacoby, who reported operating on 104 PS infants “with minimal morbidity and mortality [and] there were a further 101 who tended to present later, have less severe vomiting, showed less weight loss and dehydration, and who responded rapidly and successfully to atropine methonitrate (Eumydrin).”

This letter then states disturbingly, “In 1987 Eumydrin was taken off the market, having been in use for 60 years. Paediatricians were thus denied the opportunity of avoiding surgery with its 24-50% complication rate.”  (Note that this very high complication rate was true of many UK hospitals at the time but has fallen since 1991; however, reading the posts of parents of today’s PS babies suggests that even now PS surgery comes with many more complications and ongoing problems than medical reports admit.)  The entire letter is worth reading by those interested in this matter.

Note:  To read the comments of pediatric surgery professor-emeritus Dr Ian M Rogers on the withdrawal of the drug Eumydrin, please see my post dated 5 September 2013.

Also very disturbing for me has been to find that The Lancet, a leading medical journal, is maintaining its unavailability to the public eye.  Web searches show that this journal has included several articles on the “surgery or medical treatment for PS” issue going back to the earlier 20th century, but these are only available to subscribers or singly for an unreasonable sum of money (US$31.50 each!!!).

Withdrawing an effective drug… keeping the public from seeing articles on important matters, even after 60 or 70 years…  sigh, it makes one wonder what some parts of the medical world want to hide from us?

Help when it’s needed (1) – Damaged kids need help

Procrastination is one of my vices, and I’m also an incurable people-pleaser who avoids conflict.  So I can hardly blame my parents for these traits and I realise from personal experience that they will have felt a fair degree of inner turmoil over their failings.

In an earlier post, Then I’ll ask Mum, I wrote about my parents’ stonewalling when I asked them about the scar on my belly, the result of pyloric stenosis surgery less than two weeks after my birth.  I realise now that my mother had been deeply traumatised not only by the surgery but also by what had preceded and followed it.

A family friend reminded me recently that mum hated violence and tragedy to the extent of shielding her litter from news reports of a Sydney train collision which I well remember as a 7 year old.  Apparently mum would not let her children hear the radio news or see the newspaper reports.  Small wonder she found it unbearable to talk about my surgery and engage with her schoolboy’s inquiring mind.

And dad?  He was just too harried with work and heading for a stress breakdown which took him away for several weeks when I was 10; I know from experience that when I am stressed I defer dealing with additional tasks that are demanding.  Quite human and understandable but not always sensible, especially when it affects the deep needs of your own children.

We know now how critical it is that children who have a disability or disfigurement have their parents’ perceptive help, especially during crucial stages of their growing up.

Research by psychologists and paediatricians has extended and deepened our understanding of this area since I was a child in the 1950s.  It has been discovered that the physical discomforts and restrictions caused by a scar pale in comparison with its possible psychological and social effects.  These outcomes have been found to be profound:

  1. The effect on self esteem and body image is most immediately understandable, especially as children and young people are still in the process of developing their self-image and confidence.  Scars on the limbs and torso can reduce participation in sport such as gymnastics, swimming and football because of the need to undress and shower in public changing rooms.  Scarred people may grow their hair longer than would be usual, and may avoid eye contact because of feelings of shame or embarrassment;
  2. Scars can cause social withdrawal and affect relationship building.  Curious questions and insensitive comments often aggravate this.  Some will find it hard to start new relationships, especially with the opposite sex.  It is often suggested that “chick dig scars”, and in fact most people find scarring less offensive than interesting, but generalities rarely banish self-doubt.  Shyness is a common result and reclusiveness sometimes the long-term effect.
  3. Less known but understandable effects include –
    Students refusing to go to school and studying or working below their ability level;
    Less success in job applications: the lack of confidence is as important as the potential employer’s reaction to their physical appearance;
    Career choices are limited, with work such as modeling closed;
    More people who have scars are unemployed than those who don’t have obvious blemishes.
  4. Depression:  The distress of being scarred results in depression in some patients.  This must be more widely recognized and better managed.  Signs of depression include behaviour and/or sleep problems, sudden mood changes, sudden tears, lack of interest in food, lack of energy, and self-damaging or destructive talk and behaviour,

The psychological effects of physical scars can be very damaging not only during the person’s formative years.  The list above will explain why the effects of scarring on a child and adolescent have lifelong consequences which scar treatment or counselling will struggle to reduce significantly.

The prevention or minimization of personal trauma and good therapy are vital for those who are significantly affected by their scarring or disfigurement, whether from congenital defects, surgery, accident or other trauma in their early years.

Infant surgery has troubled me and many others very significantly throughout our lives, and our parents’ lack of awareness of the various hazards of infant surgery and their resultant failure to help their children were I believe largely responsible.  Next week I’ll give some reasons for this.

I know how important it is to encourage and help the parents of afflicted children to give their children the life-changing help they need so much.  More about the essential role of parents next week.