Immediate hazards after Pyloric Stenosis

Parents - worry01Having your new baby go through surgery, however “minor” in the eyes of the medical world, is always harrowing for the parents.  Those who have written about this will almost always say it was their most traumatic time ever, and some continue to suffer post-traumatic stress.

Remember that this surgery almost always follows a period of your infant being sick and steadily losing condition, followed by what may be a deeply upsetting period of doctor visits, medical tests, specialist consultations, and typical hospital admission procedures – with baby’s condition steadily going downhill…

Remember also that doctors are human: far too many treat their fragile patients and parents poorly, and diagnosis is too often avoided or faulty, too often ending only at a near-terminal crisis.  All this adds to the stress and strain.

Add to this that surgery for infant pyloric stenosis (“PS”) surgery is often promised to be a “quick fix”.  Although many of these little patients do recover promptly and quickly more than catch up on their weight loss, other PS babies take months or even years to find their balance – and some few never do.

Add to this that many surgeons seem to regard their responsibilities as ending when they leave the operating room, and that many GPs simply don’t engage with parents who have a baby with a feeding problem.

What are the main problems parents may have to manage after PS surgery? Continue reading “Immediate hazards after Pyloric Stenosis”

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Infant pyloric stenosis – and its possible long-term effects

Patient & doctor03People who have had a close experience of infant Pyloric Stenosis (whether their own or as a parent) are often bewildered and perhaps bemused by the medical mantra that “You’ll have a new child – there are no known long-term effects”.

We can be thankful that it seems that this well-meant but misleading assurance is usually (but far from always) valid, both in the short and long term.  Because Pyloric Stenosis (“PS”) is rather common (2-5 in every 1,000 babies is a huge number world-wide) the widespread lack of awareness of and interest in the possible long-term effects of PS is probably a good indication that ongoing problems affect only a relatively small number – but again, worldwide this is a huge number. The web forum pages of Facebook, MedHelp, Patient, and Topix bear this out.  So do the more than 100+ visits each day to my original Blog (started in 2010).

If only our experiences and the facts agreed with that mantra!  This Blog is all about doing something about “What we wish we’d known” (its web address).

Short term long term cartoon02WordPress (which hosts my older blog) also gives me feedback, and it’s not surprising that the top number of searches there have been for information about the long-term effects of PS and the surgery for it.  In this post I overview the material I posted about this to my original Blog. In the coming months I plan to post progressively to this Blog, which has an Index Page (see the banner at the top of this screen) to enable readers to overview and access its contents.

What we wish we’d known and what we want to know about the possible long-term effects of PS… please read on… Continue reading “Infant pyloric stenosis – and its possible long-term effects”

Infant Surgery and Post Traumatic Stress – some key references

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 – Body (or Somatic) 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)

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)

  • 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

– Fred Vanderbom

Launching Our PS Awareness Blog

Pyloric Stenosis (PS) treatment has come a long way since my surgery for this condition in 1952. In the old days, babies were isolated after the operation, no family visiting. No nice clear plastic surgical tubing brought oxygen and fluids to the baby; the “hoses were black, an inch thick, and so numerous, I could hardly see you,” my mother told me. And my scar was formidable, like a crazy TV antenna, which grew bigger with time.

Today, rocking chairs in neonatal intensive care units, or NICUs, are often made available for family visits. The surgical tubing is light-weight and clear, adhesive strips with cartoon images  holding them in place. And the scar?  Smaller, given the possibility of having a laparoscopic pyloromyotomy versus an open procedure for which the incision, hence the scar, would be bigger. Even so, the scar from the open method or Ramstedt’s surgery of today is far more cosmetic than an earlier one. Finally, baby is typically released after one or two days as opposed to ten days to two weeks! Continue reading “Launching Our PS Awareness Blog”

Building greater awareness

This Blog is for people troubled because of infant pyloric stenosis – their baby’s or their own.

Patient & doctor03.jpgFor many people, pyloric stenosis (“PS”) is something they’ve never heard of, even though all of us probably know several people who have had it.

Most people who have experienced PS (either as a parent or close family member, or personally) have been able to put what they often say was their “most traumatic experience ever” behind them.  I suspect and hope that these folk are a “silent majority”.

However, there are many (I believe quite a sizeable minority) who are or have been deeply troubled by PS, either as the parents of a PS baby, or as a “survivor”. Continue reading “Building greater awareness”

Is there a link between infant Pyloric Stenosis and later abdominal trouble?

Most General Practitioners (GPs) will reject any link out of hand.  Some GPs have even been known to ask their patient (or client) what “PS” (pyloric stenosis) is.

patient and doctor talkingWe can be sure that every medical textbook and training includes at least a page or part of a lecture on PS, which is the most common reason for non-elective surgery on infants in their first months and years.  But who can blame a medical student for not remembering everything they are told and read over six or more packed years? Let alone what is currently known about a condition most GPs will encounter only rarely? Continue reading “Is there a link between infant Pyloric Stenosis and later abdominal trouble?”

After infant surgery – untangling the emotional baggage

Shmool Roey 1612Last December my wife and I welcomed a friend and film-maker from the US.  I worked with him on a documentary he is making on a subject of common interest to all of us – the effects of infant surgery done when it was widely believed (esp. pre-1990) in the medical world that babies don’t feel or remember pain.  Yikes!  Yes, really.

My friend has interviewed several of us who had infant surgery in the “dark ages” and he is now recording interviews with several professionals who have written about or provide therapy for people affected by pre-conscious but unremembered (“somatic memory”) trauma.
We hope the result will be available Continue reading “After infant surgery – untangling the emotional baggage”