Category Archives: Pastoral care

Why your doctor may delay diagnosing Pyloric Stenosis

A member / friend in Facebook’s Pyloric Stenosis (“PS”) network messaged me:

After having a baby with PS I find it very difficult to understand why it takes so long for the doctors or specialist to diagnose it.  Just like to know your thoughts.  We were obviously extremely lucky.

Several other common problems around infant PS were raised and we’ll seek to address each of these in the following posts.

If like this parent your baby’s (or your) PS was recognised and treated promptly without ongoing problems, you are indeed lucky and will feel very grateful to all concerned.

M820/0092But if you or your parents suffered to the extent of being traumatised by PS, you join a sizeable club!  Social forum sites such as Facebook, BabyCenter (or –Centre), MedHelp, and Topix have allowed many thousands of parents and PSers to voice their unhappy experience of medical matters related to PS.

Well may we all wonder about the actual number of people with the problems on this parent’s mind.  For readers who are wondering, What are the problems? please read on… Continue reading

Dealing with scar shame

One of the common results of infant surgery is scar shame.

Self-Confidence2 smlIt doesn’t affect everybody, of course.  Some of us are extroverted, self-confident, ready to take on the world.  I well remember my youngest granddaughter showed these wonderful traits from the day she was born!  And 3½ amazing years later she still does… much to her parents’ delight (and occasional frustration)!

But we’re not all like that: two of her siblings are introverted and hyper-sensitive like I tend to be.  Their struggles and hurts are painful reminders of how hard I have often found it to think of myself and my issues in more realistic and objective terms than I tend to.

Recently one of my correspondents in the UK went online with a holiday photo of herself in a bikini and the caption, “this is the first photo I’ve ever posted of my scar.”  Her photo showed a deeply indented scar across her middle; her life had been saved at a very early age by surgery to remedy pyloric stenosis (“PS”).  Now, many years later, she went on to write how glad she was she had taken this step of “going public”: “I’ve no idea how many photos I have with my arm placed strategically across my scar.”  Others have written lines like, “Have been embarrassed by my scar all my life and never wore a bikini.”

Many others have gone online to say that their scar has never been an issue, never give it any thought, or that they’re proud of it.

My UK correspondent went on to publish images of a recent Cosmopolitan UK article (April 2015) by Natasha Devon.  Ms Devon is also an infant PS survivor and two years ago she suffered a ruptured spleen which resulted in her having a large laparotomy (the opening of the abdomen from top to bottom).  I had read one of Ms Devon’s blogs some years ago and want to recommend her work and writing to my readers who might be helped by them.

Art Body trolls-2 150517 FbMs Devon does excellent education and advocacy work in the UK via the spoken word, print and electronic media.  Her gifts and life Art Body trolls-1 150517 Fbexperiences have equipped her well for this work: her struggle with her PS scar resulted in a childhood obsession which seems to have been very like what I went through in my younger years.  In her teenage years this obsession became fixated on her scar becoming deeply indented giving her what look like two spare tyres around her waist.  Her concern over her body image then developed into anorexia nervosa.

Now well and truly recovered and adult, Natasha Devon has devoted herself to helping particularly girls and young women who battle with their own body image, with society’s worship of the “body beautiful”, or the predatory behaviour of insensitive and repulsive people in our various home and societal circles and via the media.

Here are some links to read more if you are at all interested –

Loving your Tum (2012, The Real Beauty Debate) – Why do many women struggle so hard to have or get a flat tummy?  Accept and love your body!

My Body is Freaking Awesome. Fact. (2013, The Real Beauty Debate) – Natasha launched a series of 4 tee-shirts with this message or alternatively: BeYou-tiful!  She also tells the story of how she recently survived the belated diagnosis of a ruptured spleen: My body is strong, resilient, clever for healing itself.

Why we should all feel sexy (2013, Cosmopolitan UK) – this article responds to a UK survey that found that many women lack self-confidence, and addresses the causes.

Cellulite, scars, tattoos, hair, bingo wings and bellies: It’s summer – so feel free to get it all out (2013, The Independent) – Natasha celebrates the start of another chancey UK summer with a call to get out into the sun, shed some of that British reserve and enjoy the freedom to dress down a little.

I beat sick internet trolls who said my body was disgusting… and now YOU can too (2014, The Sun – UK ) in addition to ‘They said my body made them puke’ Baring scar in bra left woman troll target (2014, Daily Star) and also Body Image Campaigner Shuts Down Bullies With Bravery (2014, Girl Talk HQ) – After being abused on the internet for showing and telling about her scarred body, Ms Devon takes on the trolls, defending her advocacy and giving some tips on dealing with internet bullying.

Dear Jamelia & Protein World….. (2015, The Real Beauty Debate) – Natasha takes on the fashions and food industries and how they play on the insecurities of many women to market their products, referring to her own struggle with her body image.

I found it interesting and refreshing to read some of the story and writing of someone who has worked through some of the most difficult issues I have had to deal with myself, but from a woman’s viewpoint.  Some of women’s struggles are of course not mine, although I am sensitive to them.  But in other ways men have their own distinctive struggles.

Most of us, whether female or male, feel vulnerable and insecure in certain situations.  Some of us have few of these challenges, others have them as part of their daily life, perhaps even habitually.  If you can identify with this, Natasha Devon is well worth a visit!

An email from Sarah

A hardly-known fact is that many of the people who had surgery in infancy before the 1990s were not given a general anesthetic, and of these not everyone was given pain killers.  This awful fact has understandably been kept out of the public domain as much as possible, which was not very difficult before the advent of the internet and social media, but it is now reported and conceded by many.

frustrated01Giving a general anesthetic to infants in the first two years was too complex and risky for many doctors until the later 20th century, and because locally administered painkillers affect the tissue around the incision, many surgeons chose to have their infant patients simply intubated (given an artificial breathing tube down their throat) and then paralysed. It seems parents were rarely told the details of what infant surgery involved, and probably chose not to ask. After all, the life of their new treasure was at stake. Can we blame them?

Most medical students accepted the mantra that “babies do not feel or remember pain” and so surgical procedures ranging from circumcision to abdominal and chest surgery were often done without pain management – and without much further concern.

Several of my posts have been about the huge change forced on the medical establishment by the research, writing and advocacy of  Drs K J S Anand and P R Hickey since 1987.  (You can find these posts using the “Categories” Search-box at the top right.)  Together with their work, it also became clear that many who had had early surgery without pain control had struggled (usually lifelong) with post-traumatic stress.  The late Dr David Chamberlain, the late Dr Louis Tinnin, Dr Robert Scaer and others have studied, published material on pre-verbal memory and trauma, and developed therapies to treat PTSD arising from infant trauma caused by abuse, surgery, and tragedy.

One of the links most relevant to these matters is to the blogsite Restory your Life, published by my friend and blogging colleague Wendy P Williams.  Her blogging has concentrated on what has been written about PTSD after infant surgery, and on therapies that have been developed and found helpful.

But there is always more to be said and explored on this subject area.

This past month I received an email from Sarah, which I pass on with minimal editing –

blog-writing1Firstly, just wanted to say thanks for your great blog.  I have found a lot of reassurance and inspiration.  My infant trauma was different, but as you know there’s not a lot of info out there, especially written by people who have experienced it, so it’s been so helpful.  Also I’m sorry for what you went through and how it was (not) handled.  It’s great that you’re helping to make things better for babies now, I hope that also gives your young self some comfort.

I found some more stuff and you may already have it, but thought I’d send it just in case you haven’t.

The first is the book The Trauma Spectrum by Robert Scaer.  It has a really great chapter on pre-verbal trauma.  He also points out similar things to you about infant pain management.  It’s ridiculous to think babies wouldn’t feel pain.

The second is an article by Dr Bruce Perry, How we remember.  It’s about infant sexual abuse, but I think the principles are the same.

The third is a PDF written for caregivers of traumatised children and infants.  It’s by Dr Perry too.

Fourth, a book called Transformative Nursing in the NICU: Trauma-Informed Age-Appropriate Care by Mary Coughlin.  Can’t afford it and haven’t read it, but it looks like something all medical professionals helping infants could really use.

People think I’m kind of weird when they find out how much I think and read about trauma, so it’s sort of nice to ‘meet’ another person who has handled theirs in one similar way.

Well, keep up the excellent work, I wish you all the very best.

 In response to my emailed thanks and response, Sarah replied –

Of course you can pass my email on, and put on your website.  It’s the least I can do to thank you for your very much appreciated blog.  Thanks for introducing g me to Wendy’s blog, I really liked the artwork.  It was interesting hearing a little more about how you found healing, I somehow imagine a lot of us are big readers.  The networking is such a good idea, I’m glad you eventually managed to find more people.

I found another book, it’s called Pre-Parenting: Nurturing Your Child from Conception.  The relevant bit is about how even foetuses have consciousness, memory, feelings and other important things.  It has some amazing stories of very young kids accurately telling their birth stories when they learn to talk.  Interesting to think about what he’s written in the context of infant trauma.

Thanks and best wishes to you too.

Shhh02I had infant surgery to relieve a fairly common and fatal stomach blockage (pyloric stenosis) in the dim, distant and tongue-tied past; in 1945 most people didn’t talk about unpleasant matters.  So I know almost nothing about the operation and associated matters and had no help in coming to terms with their consequences.  It has taken me much of my lifetime to piece together the puzzle parts that tell me that whatever happened to me (and my parents) resulted in the clear symptoms of PTSD (albeit mild) with which I have struggled until recent years.

PTSD which results from something that happened in our infancy is lodged in our pre-verbal memory.  This makes it more complex and much harder to recognise, understand and treat than traumatic events which we can consciously remember.

Sarah’s emails and the references she has shared here underline that people struggle with PTSD caused by all kinds of events which they have remembered pre-verbally (in their “somatic” or body memory).

Sarah has also reminded me that all those affected by infant trauma share similar feelings and frustrations, and can draw on the same interpretations and treatment of our symptoms.

And finally, Sarah’s reference links make me feel encouraged that there are always more people than I had known about or imagined working to bring healing to those of us affected by trauma of infancy.

Pyloric stenosis and training better doctors

Some of the things people do are utterly unbelievable, were it not for the fact that we humans all do so many things that range from dim-witted to diabolical.

Ostrich_head_in_sandAustralia is more affected by growing extremes of fire and flood, and yet we have a government that rejects the diagnosis and advice of 95% of the world’s scientists on climate change.

My experience of the long-term effects of a life-threatening stomach blockage which I suffered as a baby (pyloric stenosis or “PS”) has moved me to learn more about it and to publicise what I and countless others are discovering via this blog and on Facebook.

Now consider this: the medical world has finally recognised that someone with academic brilliance does not necessarily become the kind of doctor you and I would like to consult, so for more than 20 years now university medical schools have been adding a personal interview and assessment to their entrance requirements.

Imagine my utter disgust when I recently read that one of Australia’s premier universities decided to turn the clock back and scrap these character and skill assessments from the enrolment procedure!  Admittedly this university is in what is widely regarded as the country’s most uninformed and regressive State.

arrogant doc4The writer told me that “ . . . the University of Queensland had dumped its medical interview altogether, saying that it does not add value beyond academic results and was a poor predictor of academic performance.  Medical schools guard their decisions like state secrets so I am not privy to their data but the report did get me thinking about the kind of doctors we want to create and how we go about selecting them.”

One of the most common and upsetting experiences new parents can have with a “PS” baby relates to the doctors responsible for the initial assessment and care of their little one.  True, some parents go online to thank and praise their doctor and hospital staff, and it may well be that there is a silent majority of parents who don’t comment publicly on their experience.

What is it then about doctors and hospital Emergency Departments that causes so many parents to complain?  In brief, professional ignorance and personal incompetence.

Professional ignorance

Infant Pyloric Stenosis is the most common condition requiring infant surgery – at least in the prevailing awareness of the medical community in most developed countries.  It occurs between 2 and 5 times in every 1000 births.  In other words, not every family includes a PS survivor, but everyone of us knows several people who happen to have had PS!  I personally know more than half a dozen PSers (apart from the hundreds with whom I have networked online).

Professional ignorance 1Yet many parents find their doctor unaware of even the basics of PS which they have picked up from Dr Google or from their family health book.  Parents often complain that their doctor told them that their baby could not have PS if it is female, only a few days old, or not first-born.  Doctors routinely show disdain for parents’ reports of the simple signs of PS, like projectile vomits, significant weight loss, loss of soiled and wet diapers/nappies, abdominal muscles swelling and rippling after feeding and before vomiting, and a history of PS in the family.

Yes, it is true that “all babies sick up” and that serious vomiting can be caused by any of a number of serious as well as routine conditions.  It is also true that PS appears in a variety of ways: the majority of cases (but far from all) appear at between 3 weeks and 3 months old, sometimes PS becomes life threatening within days, and other times it develops for several weeks before it can be well diagnosed.  I was operated on when only 10 days old, and some PSers have reported on Facebook having surgery only days, others at 6 or 7 months after their birth.

However, what really upsets parents is that the above symptoms and facts are so often dismissed, that pleas for diagnostic tests are ignored and that often no attempt is made in the clinic to assess the obviously available symptoms – until the baby’s condition is critical and the parents are desperate.  So many parents are on record as being told (as if they were guilty of some misdeed) that “your baby nearly died before we were able to operate” or “this was the most advanced PS we have seen for a long time”.

Another area of professional ignorance that upsets many parents and survivors is the medical world’s apparently utter ignorance of or denial that PS and its surgery can have both short-term and lasting consequences.  I have posted many times about this and plan to continue to do this.

Personal incompetence

The linked article above relates more directly to the difficulties caused by doctors who lack personal sensitivity, the ability to empathise, show common decency, and have clear ethical values and conflict resolution skills – what we’d surely like to think are basics but are far from generally held.

frustrated01This post will not catalogue the complaints of parents and survivors in this regard, as I have written several posts sampling these; they also come in droves on several online forum sites and are sprinkled through the results of any targeted web search.

It both grieves and angers me that the medical profession is in some part still so unaware of or careless about the distress it can quite unnecessarily and avoidably add to the ordeal that new parents suffer when their newborn becomes seriously ill.

We live in times when many community work personnel and organisations, from social workers and teachers to banks, schools and churches, are being held to account for their laxity and negligence.

Unlike these bodies and professions, the medical world is still held in quite high regard by the general community.  Being the monitors and dispensers of physical life and death and having among the best minds and nest-eggs in the land certainly bring fear and power!  And let’s be fair, like people in every other part of society, many (and I trust most) doctors work hard, selflessly and competently.

However, much of the medical world is all-too-apparently addicted to power of various kinds.  This is why entrance interviews must be valued and maintained as much as entrance scores.

This surely is not a matter of “either … or” but “both … and”.

Pyloric stenosis hits new parents hard

Bear with me as I again reflect on the horrible pain parents endure when their newborn pride-and-joy –

  • becomes horribly unwell, unable to keep down any nourishment,
  • loses instead of gaining weight and condition,
  • causes them to find (as many do) that their usually trusty doctor n be terribly condescending and dismissive (“typically anxious  new parents,” and “try another formula”), only to be told by another voice in the medical machine, “I’m sorry but your baby is close to death, you should have brought him / her in much earlier… you’ll have to submit your baby for surgery.”

A few days ago my family marked the centenary of my father’s birth, and I dug up some of the 1945-vintage documents he left me, including (1) his receipt for paying somebody to announce my birth to the town notables, and (2) a short letter he wrote to his parents on the day after my birth.  Both are clear evidence of the extreme joy, excitement and pride my parents felt after many years of waiting to start a family.

Baby unhappy01What happened immediately after that has been wiped off the record: I have no documents, no letters and no stories about my pyloric stenosis (PS).  It must have been only a day or so after these carefully conserved sheets of paper were written that I started to throw back everything my frightened mother gave me.  Ten days after my birth their tiny frail baby was tied down on a large operating table in a nearby city hospital.

After many years I can well understand that my parents did all they could to delete the PS page of my story from their lives.  But their doing this did not help me to come to terms with my story, nor my understanding and managing the distress of PTSD that resulted.

What has helped me understand and accept my parents’ pain has been what others have written about the intensity of what they endured with their baby’s sudden and violent sickness followed by surgery.

One such account was written early in 2013 by a British father who like my father is a church pastor and who like my parents went through PS quite unexpectedly and with their first child, also a boy.  Under a powerful title, When your son goes under the knife – a dad’s experience, Roy Summers wrote –

Child under the knifeIt is one thing to be in hospital for a personal operation as an adult, but quite a different experience as a parent of a child.  As a general rule my family of six have enjoyed remarkably good health, for which we thank God.  We had an early scare with our firstborn, who had pyloric stenosis as a baby and was only a shade away from death; but apart from the normal scrapes of family life the Lord has granted good health.

Roy Summers then reflected on what he has learnt from a more recent experience, when another of his sons suffered a ruptured appendix and complications after the operation.  I recommend going to Roy Summers’ post and reading it in full, as I regard it as portraying a thoroughly human response to inner pain and beautifully integrated with Christian faith and pastoral care.  I would like to pass on the main headings to whet the reader’s interest in what Roy and his wife Yvonne learnt.

  • The last kiss?
  • Trust – placed Where?
  • Why was the first operation not “successful”?
  • How often and passionately do we pray the more important prayers?
  • Why didn’t God answer a little boy’s prayers?
  • Thank you for the medicine

Roy goes a long way beyond merely writing (as many such parents do), “This was the worst experience I have ever had!”  I am grateful to him for this.

parent-talking-to-childAlthough many of the details of this father’s experience and reflections are related to his son’s appendicitis and peritonitis operation and are therefore somewhat different from those he would have had when his first son had PS, the emotions, questions, Christian response and character-shaping issues are exactly the same.

 

Reflection: Damaged for life and eternity?

It’s not often I come home from Sunday church unsettled by the main talk, “the sermon”.

Preacher02Last Sunday we had a guest preacher at our church and he spoke well: with obvious preparation, reflection, depth, clarity and authority.  Everybody with whom I interacted afterwards seemed most impressed.  I’m grateful that after 42 years of preaching I have a similar good reputation; did this add to why I felt troubled?

What did our visiting preacher say to disturb me?

He spoke about eternal life… a subject many Christians love to hear about and which some readers may dismiss out of hand.  But as none of us has anything like the total picture of what happens after we die, this will I trust be a topic that will get you to read on!

In my 40 or more years as a Christian pastor, one of the questions people often ask me after a bereavement is this:  Will I recognise Bill (or Barb) if and when we both get to heaven?

I have always responded by reminding these folk that –

  1. the Bible teaches that God is perfectly good and powerful, and that he has a wonderful future for us,
  2. everything in that future will be so new and different that we should not be too definite about most of the details, and that
  3. God understands our loss and hopes in the face of death, but we’d better trust God more than our reasoning about what our new self, accommodation and country will be like.

Seems fair enough?

Our guest preacher however took quite a different line, one I’d not heard before but one that might seem reasonable if (as I do) we take the Bible seriously.  However, his line left some very ragged ends for me and others I can think of.  And he should have dealt with these, however briefly.

His argument seemed reasonable given that he believes God is speaking when we read our Bible.

“The Bible teaches that eternal life involves continuity as well as change from the here and now.”  Agreed.

“How can we know this?

  1. Jesus-nail-scars“After Jesus’ resurrection from his grave on the first Easter day those closest to him recognised him (after getting over their shock and disbelief).
  2. “After Jesus’ rose from death, he still carried the wounds inflicted at his execution.  Seeing these scars helped convince his followers that their Teacher had defeated death.
  3. “The Bible tells us that our new body will be like Jesus’ risen body.”
  4. Paul’s first letter to the Corinthian church, chapter 15, as well as the book of Revelation, chapter 21:1–5 are the Bible’s key passages about this subject.

I had never heard this actual argument before and it upset me.  Why?

  1. Putting Bible references together like a jigsaw puzzle to demonstrate something is only valid if it uses all the pieces that belong to that puzzle.
  2. Asserting that we will recognize each other in a resurrected body because after Easter morning Jesus was recognisable by his crucifixion scars doesn’t take into account that in heaven “everything will be made new” (or “different”) and “there will be no more crying or pain”. (Rev. 21)

Why this reasoning affected me so deeply will be clear to regular readers of this blog.

Like many people I became “damaged goods” soon after my birth: I had a stomach that didn’t function properly, so 10 days after my birthday I was operated on to remedy pyloric stenosis.  This is a relatively routine procedure now but very traumatic mid-20th century for my parents and me, and it left me with many symptoms of post-traumatic stress for much of my life.

This has made me sensitive to people with a physical, mental or emotional burden, and especially those who have carried this from infancy, robbing them of a sense of ownership.  Typically these people will present with a brave exterior, but their disability and  inner struggles would in many cases be more severe than anything I as a PS baby have ever known.  I felt outrage at a gifted preacher not even considering these people as he presented what he believed was God’s “good news” about recognizing each other in glory-land.

It simply does not square with the picture of God that Jesus has given us to preach that in our life-after-this (if it’s as we believe or would hope for) we will continue to carry our disabilities and scars – and may even be recognized by them.

way-forward-signSomething else upset me – more personally.

In recent years I have made great progress in moving from negative to positive feelings about my stomach scar and what came with it.  Rather than cover it away and deny the questions of the curious, I now my surgery and scar as part of my life story and can talk about it.

This preacher’s sermon, although I disagreed with his construct, still made me shudder at the thought of having to live eternally marked as “damaged goods”.  However, now that I’ve written about last Sunday, I think I’ve digested and expelled most of it.

Your comments are most welcome.

Wounded healers

There is treasure to be found in the darkness of tragedy, serious illness, depression and post-traumatic stress disorder (PTSD).  I don’t want to dismiss or minimize the severity of the pain and struggle in which some people live, sometimes lifelong; I know only too well that the suffering of some of these people may be overwhelming.

Wounded healer1But from a lifetime of learning and working with people I can also say that unless there is a chemical or biological cause, there comes a time when the deep darkness of sadness lifts or lessens.  The sun breaks through, probably not with the brilliance of a cloudless sky in summer, but certainly enough for some of its light and warmth to be enjoyed.

The wonderful thing is that when this happens to us, we may well have gained a much greater sensitivity to the feelings, needs and problems of others,  How good is that?

I have read that in an average group of people, when asked, some 25% will raise their hands to show they have suffered with depression.  But when the same question is asked in a group of counsellors, about 90% will so indicate.

What does this tell us?

Several things, but what is most significant in my experience is that people who have been through a time of inner struggle are far more highly motivated to know more about how their inner self functions, and to help others in similar situations.  Most of the people I know who have chosen to study psychology or social work subjects have been though an unsettling time: a divorce, a break-down, a loss in the family.

Empathy is an essential part of helping hurting people.  Empathy means being able to get into the shoes and skin of somebody in pain, to share with and understand them.  Developing empathy involves both understanding (our mind) and sensitivity (our emotions).

Wounded healer2We can develop the ability to empathize through training and experience, and some will find this easier than others, but the “wounded healer” is in a special position.  When we’ve experienced life “on the other side”, it’s a huge plus!  It’s well-known that doctors who have been through a serious accident or illness become better doctors.  Others who work intensively with people (like pastors and counselors) experience the same change.

Reading other people’s stories about infant surgery (whether as parents or as a past patient) for many years has made it clear to me that whilst some local doctors and pediatric specialists get full marks, many people are angry about the way a doctor dealt with their pain –

  • Too many doctors are patronising about the concerns of parents about a very sick baby, resentful of parents who have done their “homework”, and dismissive of parents with a genetic (inherited) basis to their concern.
  • Too many surgeons operating on infants are keen to be seen as life-saving heroes but unconcerned about reducing the impact of the surgery on their patient’s future.  In the case of pyloric stenosis (the reading about which is of personal interest), most pediatricians will not consider (let alone try) the far less invasive medical treatment remedy which is effective about 80% of cases, and many surgeons care little or nothing about the future cosmetic aspect of their craft. This is commonly explained in terms like, “My work is to save lives, not to dispense beauty treatment.” How do parents argue with that attitude?
  • The medical world cares little about the increasingly recognised long-term effects of infant surgery on parents and some patients.  Again, pyloric stenosis is almost universally regarded as “quick, elegant and always successful surgery” without any interest in researching or dealing with the many complaints of long-term emotional and physical problems.

When I read some of the frustrated or angry stories or the dismissive and haughty medical mutterings on the web, I always find myself thinking: “If only you were a wounded healer instead of a snooty surgeon”.

Wounded healer3Empathy is one of the treasures that usually only comes out of darkness.  Personal pain usually makes us more sensitive, more caring, and it motivates us to learn what we can so that we can reach out to help heal the wounds and scars of others.

It’s a simple fact that often the best healers are “wounded healers”.

However, “hardly-ever wounded healers” can always decide to become known for their empathy – those are the doctors who get the top marks.