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”

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Scars that strangle

Readers of this post may well know what adhesions are, but just to be sure, let’s start at the very beginning…

What are adhesions?

Adhesions are bands and webs of tough, fibrous and inelastic scar tissue which develop after tissue damage resulting from injury, surgery, an internal infection, endometriosis, some chemotherapy, or radiation therapy.  They can affect the functioning of muscles, joints, and ligaments, but cause most problems in the abdomen and chest where they can grow between our organs and the abdominal wall, or restrict the movement and work of our organs, causing pain and possibly restricting their function.

Adhesiolysis01.jpgAbout 10% of all people develop adhesions naturally (without surgical or other damage), but it is estimated that they occur in over 90% of people who have abdominal or chest surgery – which means many of us! So we may be thankful that they cause significant problems for only a minority – but that’s small comfort if you belong to that minority.

These problems range from unsightly sunken scars and pain to life-threatening abdominal blockages.  Adhesions cause 60 – 70% of small (upper) bowel obstructions in adults and can be the cause of chronic pelvic pain.

Some of us who have had infant surgery for infant pyloric stenosis, or for that matter any of a list of the diseases of the abdomen and chest may find that Continue reading “Scars that strangle”

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

“No brain – no pain” That’s insane!

Confused09Can a baby remember trauma experienced in her or his first years?

In times past the answer was an immediate and insistent “No”.

Before about 1990 it was commonly believed that because virtually nobody can recall and describe any event from early childhood, let alone early infancy, be it happy or troubling, a baby makes and keeps no record of anything before what we can later recall and express in words.

This of course sounded very reassuring and comforting!

  • The serious mistakes some parents make when a baby is very young – hey!  “They leave no memory, no record, no damage.”
  • Family, life and health dramas which a little one survives – “No need to worry about it affecting baby.”
  • Separation from mother, adoption, foster relationships – “None of this will affect let alone harm a little one.”
  • Will we have our baby son circumcised “so he looks like his dad”?  “Go ahead, I’m fine, no worries!”
  • My baby needs life-saving surgery but anesthetising a baby is risky – “Just go ahead, she won’t really suffer.”
  • A baby’s screams (obviously from extreme pain) under the knife upsets a young theatre nurse – “Hey, he won’t remember anything.”

Continue reading ““No brain – no pain” That’s insane!”

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”