Adult Pyloric Stenosis

Infant pyloric stenosis (“PS”) is not well-known in the general community.  Even fewer (in fact, far less) people know anything about the adult form of PS.

The stories of adult PSers vary even more than those about the infant form of the condition.  However, the basic cause is the same: high gastric acidity. And the symptoms are in general the same: Continue reading “Adult Pyloric Stenosis”

Long-term hazards

When your baby had infant pyloric stenosis (“PS”), the surgery marked the end of a difficult time for you and your newborn treasure… Right?

If that’s true of you as parents or you as the baby, you belong to the truly blessed ones – at least in this respect!

Patient & doctor01Most doctors and websites tell the parents that there are no long-term problems after PS and its surgery (pyloromyotomy).  Only a minority of the websites I have seen are a little more careful, assuring us that “most” babies will have no more problems.  None go into detail about that “most”.

In 20 years of trawling the web I have yet to find Continue reading “Long-term hazards”

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”

To Be or Not Be …….. Grateful

Written by Wendy Patrice Williams on November 2, 2016

As adult survivors of infant surgery without anesthesia, it’s difficult to be angry about what happened to us early on. We feel grateful for having been helped and saved, and we should. The surgeons, the nurses, the staff, our parents, and families leaned in and lent a hand. We survived because of them. What’s not to be grateful for? Continue reading “To Be or Not Be …….. Grateful”