Tag Archives: progress

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

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Pyloric Stenosis in the developing world – a sample

People who have experienced pyloric stenosis (“PS”), either in their early infancy or as the parents of a very sick baby, will probably realize that such babies would most likely have starved to death if they had been born more than a century ago.  During the first 30 years after the publication of an effective surgical treatment for PS (Ramstedt’s pyloromyotomy) in 1912, the death rate fell from close to 100% to below 5% in most wealthy countries, and today it is well below 1% in those countries.

But that is still not true everywhere.  Do we ever stop to think what it’s like to have a PS baby today in an underdeveloped and poor country?

In the week before Christmas this subject will get some attention in this post.  I have found 3 medical reports from Africa on which to base this piece, but sadly and to me inexplicably, these articles are only available to the general public in “Abstract” form: read “a very brief summary”.  Most of us cannot afford US$40 per article to read such material, and surely these 3 reports are not “of rolled-gold value” to the medical world;  they were written well over 20 years ago and relate to data even older and from very needy countries far from the domains of most of our readers.  Besides, they aim to improve what may be rather basic pediatric skills and treatment.

Grrrr!  In fact I feel anger and disgust at the medical publishers who (according to recent news reports) maintain this choke hold on medical information… in the interests of medical science? Shareholders? Raw opportunism? Who knows?

Africa map2The 3 Abstract reports relate to PS cases in Ghana between 1974 and 1988, in five years before 1991 in Dar-es-Salaam in Tanzania, and in Addis Ababa (Ethiopia) between 1981 and 1986.  Click on the links to read them in their complete Abstract form.

Here are some of the things I found interesting…

  • The 15 year Ghanaian study of 84 infants saw 9 boys having surgery for every girl, far more than the usual incidence ratio which has been found to range between 2.6:1 and 5:1.
    The 5 year review from Dar-es-Salaam saw only 15 PS babies, with a male: female ratio of 6.5:1, also higher than among Caucasian (white) populations.  The PS incidence rate was (as is well known) much lower among Tanzanian Africans: about 1:5,500 live births.
    The report from Ethiopia related to 34 babies seen over 6 years, and saw an incidence rate approaching Caucasian levels: between 2.7 and 3.6:1,000.  The male:female ratio was 4.7:1, also much closer to the Caucasian ratio.
  • It is also well-known that first-born babies have a higher risk of developing PS.  Almost 24% of the Ghanaian babies and 26.5% of the infants seen in Addis Ababa were first-born.  The Abstract of the report from Dar-es-Saalam did not mention this statistic.
  • The Ghanaian article reported a 3.6% mortality rate: 6 of the 84 infants.  Two of the 15 babies followed in the Tanzanian study died after their Fredet-Ramstedt pyloromyotomy, a relatively high mortality rate of 6.7% (but on a very small number).  In the Ethiopian report, none of the 40 patients died after surgery but 7 developed complications.
  • The report from Ghana mentioned that 10.7% of the 84 babies followed had other congenital abnormalities, which is consistent with studies elsewhere and a much higher figure than among the general population.  The Abstract did not mention which other abnormalities were found but other reports often mention intestinal malrotation, defects of the urinary tract, and esophageal atresia; inguinal (groin) hernias also occur often in infants after PS but these are probably collateral damage from the strains of PS rather than genetically, biochemically or otherwise developmentally linked.
  • The report from Ghana stated that fully 1/3rd of cases started vomiting in their first week after birth.  “The peak-age of presentation and diagnosis was between the second and sixth weeks of life.”
    The Tanzanian article’s Abstract did not include this subject.
    The report for Addis Ababa stated that 76% of babies started vomiting during their first month, and that all babies started to show symptoms during their first 3 months with an average age of 3 weeks.
  • The Ethiopian report included several other findings that are quite typical of PS:
    – 23.5% of the babies were from the higher socio-economic groups (well above average);
    – no seasonal variations were found (contradicting several other reports);
    – a “pyloric olive” (a tumour that could be felt) was detected in 35% of babies.

Some remarks

Although my comments can only be based on three very succinct Abstracts of much more detailed reports, several things are significant to me.

  1. A blast from the past? This Ugandan lad has had recently had PS surgery - but with a very crude wound closure

    A blast from the past? Click on this image to see that this Ugandan lad had fairly recent PS surgery – but with a very crude wound closure

    Developing countries 20 or more years ago were struggling to catch up with the wealthier countries, reflected here in their surgical treatment of PS.  Having followed the flow of generally available medical reports on PS related issues from all over the world since 1997, it is clear to me that while many “centres of excellence” have emerged in the developing world during this time, there are also many signs that little has changed in many poor countries, under-resourced hospitals and the skills of surgeons trained and working in them.

  2. It is probably true the these three Reports reflect that the more recent progress in many of the planet’s poorer countries mirrors in a delayed way the progress that took place in Europe and North America in the earlier decades of the 20th century.
  3. None of these three Abstracts mentions treating PS medically as the safer, cheaper and less technology- and skills-demanding alternative to surgery, a recommendation that I have read recently for contexts such as the African one. One wonders whether self-interest or good management drives this obvious preference for surgery that is usually unnecessary and certainly more traumatic for parents and baby.
  4. Comparing these three reports reminds me of
    (1) the many standard features, variations and mysteries that remain around PS, and
    (2) something of what PS surgery was like when I was born in 1945.

There has been progress world-wide!  When I was born almost 70 years ago, most PS babies outside the developed world would have died.

But even in the 1980s this was no longer true!  What will the next 70 years bring?

Thanksgiving – a time to count blessings

Many around the world are covetous of the United States’ Thanksgiving Day tradition.  I’m writing this on the fourth Thursday in November, when Americans at home and abroad gather to enjoy a celebratory meal followed by a long weekend.  They’re giving thanks for a number of particular reasons, flowing from the founding of their nation as marked by the arrival of the Pilgrim Fathers at Plymouth Rock late in 1620, these settlers’ first harvest a year later, and the breaking of a serious drought in 1623.  The original thanksgiving occasions took the form of grateful Christian worship meetings rather than a high-calorie meal!

The Netherlands is my country of origin and Australia my adopted country: sadly, neither has anything like Thanksgiving… nor do many other countries (other than Canada) to my knowledge.

In this post I would like to register some of my thanks at a personal level and in regard to my writing these posts, which are a modest part of the centenary of infant pyloric stenosis (“PS”) surgery.  I regard God (as I’ve come to know God through Jesus Christ) as the ultimate maker and giver of everything that is good, and so I honour and thank God  –

  • For the gift of life which most of us today in the developed world take for granted, but which my PS scar keeps reminding me is always a tenuous gift.
  • That PS is so readily treatable by a course of medication or by surgery.  Although I have hated my scar and still have mixed feelings about it (as I do about my other personal inadequacies and battlefields), I have come to realise that without prompt surgery I might not be writing this today.  And of all the abdominal conditions of infancy, PS is not only by far the most common, but also the one that is the most easily corrected and with the least “collateral damage”.
  • For my parents who, even though as people of their time they were ill-equipped to help me understand and “own” the trauma and pain my PS surgery caused me, nevertheless suffered much and loved me through what was for them too a horrendous experience.
    More generally, I am grateful for strong women who can become assertive and even pushy mums.  The web is littered with stories of mothers who stood their ground when they are put down by a condescending doctor who belittled their prior experience of PS, their parental research, and their motherly instinct that something was seriously wrong with their baby.
  • For the hospital staff who nursed me during those first weeks of life in such a way that despite the rough-and-ready way infant surgery that was done at the time, I wasn’t added to the medical morbidity (complications) and mortality statistics.  (The psychological/ emotional after-effects were another story, but unknown at the time.)
  • That medical science, researchers and writers have during the past 100 years added unimaginably much to our understanding and skills in treating life-threatening and life-affecting medical conditions.  Whether it’s the risk factors of a relatively obvious abnormality like PS or the mapping of the brain or genes, we are far from in control, but we do feel increasingly empowered.
    More generally again, I give special thanks for doctors with good diagnostic skills which allow PS babies to start treatment before they are near death, to surgeons who know their stuff and have a deep respect for their tiny patient’s emotional and cosmetic well-being, and to parents, pediatric specialists and hospital sections with the courage and kindness to advise and try medical treatment of PS rather than letting the surgeon set the agneda.
  • That support communities and forum interaction are so common and easily formed and developed today!  As one who was deeply affected at the personal level by my PS experience, I know what it was like to live in isolation from information, explanations and others with the same nagging questions and deep aches.
  • That my two years of weekly posting at this address has met with such a strong and positive response.  Although comments have been fairly infrequent apart from those of my faithful co-blogger, they have been invariably positive, appreciative, and in harmony with my passion here.  Often they have been a complete surprise and most heartening.  And the number of visits far, far outnumbers the comments.
  • For the fact that none of my children and grandkids have developed PS.  Infant PS is known to result from any of several factors, and it seems more likely that my stressed out mother was involved in my first problem than my genetic code.
  • Generally again, I thank God that in the developed countries at least, babies today rarely die of PS.  Until some 50 years ago, there were some terrible mortality rates due to delayed diagnosis, the unavailability of suitable treatment, and surgical and post-operative complications.  Times have certainly changed!

What dunnit? Who cares?

Many like myself who have had pyloric stenosis would love to know what caused it.  So would many of our parents.

The short answer is: we still don’t know.

After more than a century of medical research with increasingly powerful tools, we still have very little understanding of why some babies are born with this or other life threatening defects or develop them soon after birth.

Having had surgery for pyloric stenosis (PS) very soon after my arrival, I have often felt very angry frustrated about the apparent lack of medical research to discover the cause of this rather common and deadly condition which has been recognised for more than 120 years.


Not having access to medical libraries, it took the advent of the Web to show me that there have been many research projects on infant PS, resulting in lots of scientific-speak (biochemistry especially is very foreign to me despite its importance!), many improvements to the care of infants having surgery, but no definitive answers to my actual question:
What actually causes these problems?
And so:  What can we do to reduce their incidence?

If PS could be completely prevented, it would save a huge number of babies and their parents being deeply upset and perhaps disturbed in the long term by this fairly common and very traumatic condition.  However, if we don’t know what causes PS we cannot prevent it.

Although my years of interest and research on this issue have not answered my question, they have helped me to understand that my wish list is in fact far too enormous to be met in the foreseeable future.  All the medical research to date has hardly scratched the surface of understanding our bodies and minds!

I’ll restrict myself today to defects of the abdominal area in infants.  That leaves out all those babies affected by defects of the spine, limbs, brain, nerves, face, heart and lungs… and more!  Wow, how kind is that?  And… because just the abdominal area of a baby can have any one of many defects (and sometimes more than one).  I’ll just discuss just three of them – and very briefly.

Abdominal problems in babies may be caused by damaged or defective genes, by biochemical abnormalities, by the failure of some of the baby’s organs to develop normally before or after birth, or by “environmental” factors outside the baby’s own developing body.

Hirschsprung’s disease is not the most common reason for infant surgery but the major surgery to remedy it and frequent ongoing problems (incl. further surgery) make it an important and challenging subject for research.

This disease occurs about once in 5000 babies, who are born without the normal nerves in the lower intestine, causing chronic constipation.  For many years Hirschsprung’s disease was thought to be multi-factorial like pyloric stenosis, having both “natural” and “nurture” causes.

Then two independent genetic studies reported in 1983 that they had succeeded in linking Hirschsprung’s to a particular section of our genetic code.  This research suggested that one gene was responsible but was not able to identify it.  Further study has not been definitive but has shown how complex the biochemistry and genetics of Hirschsprung’s are, and that the factors behind Hirschsprung’s may also be part of other conditions sometimes found in babies at or after birth.

It is clear that there have been significant advances in understanding the causes of Hirschsprung’s and in its surgical treatment, but also that our understanding is still far from complete.  Although Hirschsprung’s was recognised earlier than PS and has been the subject of more study, there has been no reduction of its incidence and its effects on those touched by it.

Wikipedia has a more informed and informative overview of the current state of research into this baffling and complex condition at http://en.wikipedia.org/wiki/Hirschsprung%27s_disease.

A congenital diaphragmatic hernia (CDH) is a rupture of the diaphragm, the muscle sheet that separates the chest organs (the heart and lungs) from the abdominal organs; it is the movement of our diaphragm that enables us to breathe.  With a CDH, the abdominal organs like the liver and stomach intrude into or put pressure on the upper (chest) organs, often to a critical degree.  This hernia occurs in one baby among about 2500 and has a high mortality rate (40-60%) because of its effects on lung and heart function.

CDH is a defect in the baby’s development and occurs before birth; it is believed that there are also environmental or external factors, but these are poorly understood.  Although there are four or more types of CDH, most are of one of these (Bochdalek hernias) and these cases may occur together with other infant maladies and abnormalities in the baby’s chromosomes.  Often there is a family link.

I have not found much more information on the web about the causes of CDH or about research into this.

Infant pyloric stenosis is the most common defect in babies that is usually remedied surgically.  It is certainly multi-factorial, with a long list of risk factors which are not well understood: being male, first-born, Caucasian, Jewish, having B or O blood, exposure to the antibiotic erithromycin, and having a young, stressed and/or bottle-feeding mother.  Although many cases occur among relatives and 75-80% in males, no actual genetic link seems to have been mapped.

Dr Conrad Ramstedt published his surgical technique for the opening up of the pyloric muscle in 1912 (see my 11 January 2011 blog, A survivor by an accident), and his remedy is so simple and immediately effective that it has not been improved upon.  But a great variety of incisions to access the pylorus have been used, although the remedial surgery is now increasingly done laparoscopically (via “keyholes”).

My conclusions?

  • I feel overwhelmed when I think of what can go wrong and affect us before and after our birth.
  • I feel very grateful to have lived a full and longish life, realising that if I had been born 50 years earlier, I would certainly have died a very early and heart-rending death.
  • I realise something of how complex our infant and adult development and our possible defects are.
  • I am thankful that the condition I had (PS) did not leave me with significant physical problems – although the emotional washup has been a different matter.  Many of those few affected by congenital defects have to cope with lifelong physical and medical as well as psychological challenges.
  • I realise how immense the list of human defects and conditions is that we (the general public) and medical workers and researchers would love to understand and be able to manage better.
  • I full well know that although medical science has made great progress, it is hardly God, and many unknowns will always remain to keep us puzzled, frustrated, and humbled.
  • I feel sad when I notice how much better we understand many of those areas of medicine that affect adults (the list is endless) than those related to infancy.  I suspect it comes down to those who have the voice, the numbers and the purse.
  • I am reassured that nothing my parents did caused my PS, and that in almost every case the same is true of other survivors, parents, and conditions of infancy.

Making a mountain out of a molehill?

Why spend my precious time reading, emailing and writing about my infant surgery for pyloric stenosis 65 years ago?  Some of my readers must ask this.  I sometimes ask myself this question.

Roey Shmool put the answer this way at a Conference on the effects of infant colorectal surgery in 2009:
If the fear and anxiety we feel as adults results from what we endured as children, then how do we lessen the burden for children and adults today?  (His excellent personal address is available on the web, and the interested reader may also like to see the trailer to a movie he made about several people’s journey with gastric, intestinal and rectal diseases.)

For most people, infant surgery is unknown territory.  For many of those touched by it, it seems to pass by causing only some temporary ripples.
But many parents found that seeing their newborn pride-and-joy very sick and submitting their baby for surgery is the hardest time they’ve ever been through, although they’re grateful when the outcome is good and they can put the trauma behind them.
Many doctors do wonderful work listening to and reassuring the parents, explaining the condition and the surgery, and doing the procedure with the care and skill they would expect if the baby was their own.
Many survivors of infant surgery may take a little time to come to terms with the mystery markings on their body and their even more mysterious explanation, but they are grateful to be alive, often without life-affecting effects.

However, there is a real need for all those involved in infant surgery to be more aware of how things can be better in what we all hope is only a minority of cases.  These blogs aim to open some chapters and give some people a voice about the possible problems that may occur when babies and infants need life-saving medical treatment.

For some years now I have collected people’s stories, medical information and relevant research reports (inasfar as these are freely available).  Below is a brief taste of just some of the issues.  Feel free to comment or to contact me about the sources.

Sloppy diagnosis and arrogance –
My … son and myself had this.  My son was finally operated on after I refused to leave the hospital until they found out what was wrong – and lo and behold, it was exactly what I had told them 3 months before when he was vomiting constantly.  His case is now under investigation as no blood test etc had been taken during his other hospital visits – 22 in total.
And this –
I was born with PS and my second child, a son, … was diagnosed with it at 4 weeks.  Luckily, having had it myself, I was well aware of the odds of my child having it, especially a son.  The pediatrician as well as the ER wasn’t extremely willing to diagnose PS until I advised them that I had also had it. … Prior to that, I got quite a bit of attitude and snubs.

Sloppy parenting –
…my family never told me I even had a surgery as an infant until I was 18 years old, let alone what it was. … The only thing i hope is Jacob [her son who also had PS surgery] won’t be sensitive with his belly like I am.

Sloppy surgery –
I don’t think my parents were ever under the delusion that my scar would fade.  It’s pretty big compared to a lot of the other ones that I have seen.  My mother even admits now that it “wasn’t done very well”... –
And this –
my husband’s surgery was not a cosmetic surgery.  The surgeon was not thinking of minimal scarring…  Therefore, he didn’t utilize a stitching technique that minimizes scarring.  Secondly, the surgeon was lousy at stitching.  [This doctor] said that the reason my husband’s scar looked as it did was a reflection of the surgeon, NOT the surgery.

Traumatised parents –
As a baby my husband had pyloric stenosis… He was born 50 years ago and there were no good anaesthetics for babies, so at 6 weeks old he was strapped to a cross and put into ice for his operation.  … all he has to show for the experience is a very impressive scar, I suppose they were worried about being quick rather than neat.  I’m very thankful that even in such conditions they could and did operate, and also that progress means today’s babies and parents don’t have to go through that. …
I know it made a huge impression on my mother-in-law, she describes seeing him tied down and his arms tied out, then going in the ice and turning blue.

Emotional issues –
My parents took me to have surgery to get it repaired.  I still don’t know what the doctors did to fix it. … I’ve often wondered if that experience had some subconscious effect on me.  My relationship with my mother has been very strained at times – but it’s mostly because of my own perception of how much she seems to care about me. … I can’t help but wonder if the malnutrition I experienced for a brief time … could have affected the way I view my mother forever.
And this –
I have many other stories that involve my childhood, mostly sad and painful stories, and I believe they are all related to this first one.
And this –
I acted bizarrely when I felt threatened.  I would deny that I had a scar, pull my shorts and swimmers up way too high (much to the annoyance of my mother), and later I always crossed my arms to protect my midriff from the eyes and questions that I felt shamed me.  I had also started to self-harm, to avoid any school sports and gym sessions that would involve baring my stomach, and I developed a quiet mistrust of doctors and steered clear of them as best I could.

Adhesions from the surgery –
My husband just had gallbladder surgery and the surgeon came in … and said the problems with his gallbladder were more from his ps surgery when he was 3 weeks old.  He removed his gallbladder and all the adhesions.  Basically the adhesions were causing the gallbladder problems.

Cosmetic aching –
I actually hate my scar… I’m proud to have it in a way, as if i didn’t I wouldn’t be here.  But it just makes me feel so uncomfortable in tight tops as i have a lil hang-over on it.  I won’t wear bikinis – well, in fact I don’t swim much because of it.  Yes, its vain but in my eyes i feel disgusting with it . So I completely understand why you would want to have it lasered away 🙂
And this –
I am 14 years old and i had Pyloric Stenosis.  Depending on where you go your scar could end up looking like a tv antenna or it could just be a small red line.  Don’t let the doctor use clamps or staples to close up the cut.

Cosmetic surgery – yes or no?
I hate mine.  I tried out for a professional dance team and was told, “I really hate to see you go because your dancing is great but with all the modeling we do and two pieces we wear I can’t have a big scar on your stomach.”
Does anyone have pictures of scar revision before and after on pyloric stenosis?  I have been looking on the internet and can’t seem to find one.
And this –
I want the operation now to undo my ps scar from my muscle, a bit scared though as I’m 38 now.  I had the op in 1973 !!  I’ve got 3 sons aged 20, 11 and 5 who have been lucky enough not to get it, also I get a lot of discomfort, even when I was 9 stone it looked the same !!  If anyone had their scar undone from their muscle I would like to hear from you please to see if I have anything to worry about.

So why would I spend some of my time learning, networking and advocating about infant surgery?

Thankfully only some of the many possible ongoing effects of infant surgery have affected me directly.  But I’m one with many others who have wrestled or still struggle with real (and perhaps even some unreal) results of this chapter in our story, as I realise:  There but for the grace of God go I.

Perhaps these blogs (together with more aware times) will help improve the future somewhat for those affected.

What could you do that may make a difference?  Why not post a Comment?

Scarred survivors

Just 100 years ago a surgical remedy for infant pyloric stenosis was discovered by a German doctor and by accident in 1911. More about that in another blog.
Until then, about four in every thousand babies died tragically from hunger and dehydration because of pyloric stenosis, a weird condition which is still poorly understood. Had I been born just 30 years earlier than I was in 1945, I would have been part of that statistic.
Pyloric stenosis afflicts first-born male infants more often than other babies, something reminiscent of the Bible’s story about Israel’s liberation from slavery. The agonising death of brand new parents’ recently-arrived pride-and-joy is always terribly distressing, but 100 years ago it was probably grieved over with a degree of stoic acceptance… infant and maternal deaths were sadly common in all the world until recently, so God was blamed and, well, for the sake of the family “rather the baby than the mother”.
We can imagine that as often as not, parents would have resisted the medical profession’s well-meant attempts to prevent their baby starving to death because of its chokingly swollen stomach valve. Infant surgery was unbelievably crude until quite recently, and almost always unsuccessful in the early 20th century. The surgical technique to stop pyloric stenosis was very severe; and more complex conditions (such as those listed in the previous blog) were completely beyond the skill of doctors. Anesthesia was often regarded as too dangerous or indeed unnecessary for infants; surgical accidents and post-surgery shock caused many deaths, and then there was infection control… or the very poor understanding thereof.
Infants who survived surgery a century ago were very, very rare. Today many of us born with one or more medical problems (see my previous blog) are deeply grateful survivors. We’re thankful to be able to live what is in many cases a full and healthy life, thankful for huge advances in medical knowledge and surgical skills, thankful for gifted and caring surgeons, and thankful for conscientious nursing staff and loving and wise parents.
Yet I have become aware that surviving infant surgery sometimes leaves very painful scars quite apart from the physical marks left by the surgeon’s efforts. I have experienced that personally. As well as scarred surgery survivors, there are parents also who have been emotionally scarred.
It is these people and their stories that I’m interested in here. The blogs to come will I trust include a few of their stories and seek to bring a degree of understanding and healing to some of their pain. I also want to suggest ways of reducing in the future the number of people who feel they are scarred survivors.
If you would like to email your story to me or comment on what I write, please do! I welcome your input and support.

Amazing progress and yet

You would not be reading this blog were it not for the rapid development of medical science.

It is estimated that in 1900 in Europe and North America well over 10% of infants did not survive their first year.  A quarter or more of children never become adults in some parts of the world today.  That used to be true for everybody everywhere.

I was born with pyloric stenosis, a weird little medical abnormality which until less than a century ago killed 95% of its victims during the first few months of life.  A PS baby suffered a slow and heart-rending death from malnutrition and dehydration causing systems failure.  Now, thanks to a simple surgical procedure or a few weeks of medication, more than 99% of pyloric stenosis survive in many countries.

Many of us could say a similar thing about their own congenital condition, or their childhood asthma, appendicitis, or diabetes.  The vast majority of us today have never lost a child, and many of us have not even known of a child who died due to a birth defect or illness.  But this is a very recent change.

Especially during the past century or so, medical workers including village doctors, university researchers and hospital staff have laboured to extend vastly our understanding of health and sickness, biochemistry and surgery, human care and psychology.

But we humans are fallible and our best work is imperfect.

My interest in the story of my infant surgery has made me very aware of this.  A 1001 or more websites and blogs tell us that modern medicine is fantastic… but.

I hope my blogs here will help in a small way to increase the awareness of how the amazing progress of medical knowledge and care can be made even better.