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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The Redo Power of EMDR

“Nice and soft,” my pediatrician proclaimed after palpating my two-year-old belly as I lay naked on the exam table.  Once again he could not find that solid stone, the pyloric ‘tumor’ or ‘swelling’ of the pyloric muscle, that shortly after birth, had stopped my stomach from working. “Could she have problems down the road, say when she’s fifty?” my mother asked. “I don’t think so. We’ll keep checking, of course.” To many, this conversation may seem benign, but for me, the one whose body they were referring to, danger took root.

At any point, I could be in trouble, I understood. At any time, I could be stricken, close to death, feeling unbearable pain. The ‘tumor’ might return. I don’t recall thinking these thoughts. I do recall panicking. I do remember tensing up, my breath and mind freezing. I do recall alarm bells going off in my head and a thousand unformed questions battling one another. Emotionally, I lifted off the planet, helpless, alone, and afraid for my life. Emotionally, I got stuck. When would it be back?, I worried.

In EDMR therapy sixty-four years later, those questions about what I’d heard as a child were still emotionally alive. As the wand whipped back and forth, I found myself back on the exam table but this time, in a reflective mode, not actually in the experience itself. A nurturing, older self stood next to toddler-me, my mother absent. Toddler-me to nurturer: “So my body could attack me again? Could I end up in the hospital?  Could I die?  So I need to be hyper-aware as to whether it’s come back?” My hands shot up to my throat. “Will I be intubated again?” These thoughts and emotions rapid- fired out of me as the wand swung left and right. The nurturer, that more adult part of me, answered with equanimity and grace: “Don’t worry. You are fine. You won’t be sick again. The operation fixed you. You are free!”

Then, as the wand continued metronoming, I was my child-self in kindergarten, running without hesitation to play in the doll house and next, to the sand box, unburdened, without that constant cautiousness and dread I’d always felt–without the fear of death weighing on my shoulders. I was light and happy, gravitating toward whatever stirred my fancy–fleet and spontaneous. Happy!  EMDR  interrupted that terror that the early conversation between my mother and the doctor and the consequent unasked questions spawned. A new neuronal brain loop formed, sparking movement toward a new way of being in the world. Such is the power of EMDR to undo and redo! The power of EMDR to heal.

–by Wendy Patrice Williams

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

“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!”

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”