Tag Archives: empathy

Pyloric stenosis: treasure and then trauma

How could the birth of a new life, the time of life’s greatest possible personal triumph, also come to be remembered as the greatest trauma that the same person has ever endured?

baby worriesThe birth and unexpected death of a child must surely be the most poignant possible example of that.

A close second must be the birth of a child who is damaged or imperfect in some other way. But it is surely beyond belief that the tragedy of finding that this brand new gift is damaged is sometimes made unimaginably deeper when the people we look to for advice and help are unsympathetic and dismissive of our concern and pain.

Surviving infant surgery (the theme of this blog) sometimes means for new parents, “surviving the hard and closed minds of the medical world”.

There are several Facebook Groups that offer support to those affected by infant surgery, especially infant pyloric stenosis.  PS is the condition responsible for the highest number of life-saving surgeries (operations) on babies. The great majority of “threads” (complaints, discussions and advice) on these Facebook sites relate to the unnecessarily long weeks before diagnosis, and to being treated very poorly by doctors.

Several mothers have posted about their unexpected and deeply frustrating experiences on their blog.  Jenn Cahill is a British mother whose traumatic experience in getting recognition and treatment for her son’s PS helped her to start blogging about this and other challenges of pregnancy and new motherhood.

girl-w-laptop01In a recent post, Pyloric stenosis, Jenn put on record her mother’s battle to have her (Jenn’s) PS taken seriously back in 1993, only to happen again a generation later!  Jenn post chronicles the almost unbelievable story of her 2-3 week struggle in 2015 with dismissive medical staff before her son’s PS was taken seriously; by then his vital signs had deteriorated to the extent that it took several days to resuscitate him enough to withstand a relatively simple surgical procedure.

At the same time as she posted her story (early February 2016), Jenn participated in a spirited discussion of this issue on Facebook’s Pyloric Stenosis Support Group.  (Note: this is one of several “closed Groups” dealing with issues around PS, “closed” meaning that Facebook subscribers can find each Group but not read and add their own material unless they join that Group.)

Here is the opening story to a P S Support Group thread – from a US mother, posted on 29 January 2016 –

Hello all, my son and I were struggling with feeding issues/lack of supply, so I had him checked for tongue tie.  As it turned out, he did have posterior tongue tie, and he had his frenulum snipped at 2 weeks.  His first feeding afterward, he threw up a large volume within minutes of each other.  I called our ped in a panic and was told he overfed as he was finally able to suck effectively.
This began 7 weeks of misdiagnosis hell.  He continued to throw up 1-5 times a day.  Our ped diagnosed him with reflux.  We tried different formulas, and he was put on prevacid.  His vomiting wasn’t projectile, but forceful and huge in volume.  The worst was when he was on enfamil AR – the formula was so thick that it was extremely difficult and painful when he vomited.  I was so scared watching him during these episodes.  We were at the ped nearly every day, getting nowhere.
Vomiting continued, and he was barely gaining weight.  We went to a GI specialist at 4.5 weeks.  At our first appointment, I asked if he could have PS and if we should do an ultrasound.  My concerns were brushed off.  The specialist diagnosed him with a milk protein allergy in addition to reflux – told me this was all normal baby stuff.  My son’s health continued to decline.  For an entire MONTH, we saw this doctor.  I asked at every appointment if he had PS, shouldn’t we do an ultrasound.  I was refused every time.  Finally, at our last appointment I demanded one, which confirmed my son DID IN FACT have a severe case of PS.  She fought his diagnosis all day, ordering the barium swallow test and ANOTHER ultrasound.  Both of which confirmed PS.  He had surgery the next day, after being hooked up to iv’s for 24 hours as he was extremely dehydrated.
He is now 7 months, thriving, healthy, so happy and sweet.  Yet, I can’t get over what we went through.  I can’t forget the pain and stress of it all… can’t stop punishing myself with the what ifs.  I thought I was progressing, but today I had to write a letter of hardship as we’re applying for financial assistance with his many overwhelming medical bills.  I had a total meltdown reliving that time.
Sorry for the long post.  Just looking for support from PS parents.  He is my first baby.

In a later frustrated response –

Made me question my instincts over and over.  Made me feel like an utter failure as a mother.  All the while my son’s health deteriorated with no end in sight.  I’m so glad I finally demanded that ultrasound that day… I can’t imagine how much longer he would have suffered or what would have happened to him.

Another new mother added –

Funny you should post this as I’m up at 3 am reliving our 9 weeks of hell with exactly the same story as yours.  The guilt and anger consume me at these times of night so I decided tonight that I am over the weekend going to make a formal complaint to the hospital as I want to ensure an investigation takes place so it doesn’t happen to someone else as new parents with a very ill newborn.
All I think we can do is console ourselves that we trusted our instincts eventually and we put our trust in the professionals which we should, but unfortunately their duty of care was sub-standard.
I’m glad your little one is now thriving, my little boy is also 7 months and doing really well but it has traumatised me and although it’s faded and I’m sure will more with time, I think these experiences will last with us for a long time.

And another mother wrote –

Thank you for reaching out to me – I’m sorry you also went through this.  It’s so awful.  I swear, I have PTSD.  I suffered major anxiety/panic attacks the first month or so afterward.  I felt okay for a bit, like I’d processed things and then out of nowhere, I’ll have a bad day like today.  It’s also hard not to worry that every little thing is a result of the many weeks of unnecessary vomiting or fear for future health issues.  I filed a complaint against the doctors with the Medical Board… who knows if they will be reprimanded, but at least I tried.  And, wrote scathing yelp and google reviews.  It’s sickening how negligent medical care can be.
Can we keep in touch if we ever need to talk or are having a rough day?  I don’t feel like any family or friends can truly grasp how I feel or what we went through.  The worst is the “just be thankful he’s healthy and thriving now.”  As if I’m not or I don’t know that…

And she added –

Ugh, don’t get me started on insurance.  I feel I’ve wasted half my son’s life on the phone dealing with them.  Pretty much every single nap until the last couple weeks.

And another mother’s story in brief –

My story is exactly the same as yours except I was told reflux by 8 different doctors.  And just treated like an “over anxious new mum”, told to go get some rest!  Had to film my baby having a seizure which he would have every night from the pain and the choking before I could get just one doctor to listen!  I’m still so angry.

There were many more contributions than those included here.  I end this selection with another of Jenn Cahill’s responses –

Had exactly the same story as you with the main difference being I had PS as a newborn!!!  And they still refused to diagnose him despite it being a much stronger risk if your mother has previously had it.  Absolutely ridiculous.
I struggle to have faith in Doctors now as I think they’re trying to just brush me off as a silly mother as they did when he was tiny.
He’s 6 months now and yet I still panic if he throws up a large amount.  And I’m terrified for the future as we are planning a second and I’m so scared we are going to go through it all again.

It needs to be added here that –

  • Scared_Doctordoctors are known to be busy and work long hours, usually covering a wide range of health issues: hardly a situation conducive to a sensitive listening ear;
  • many infant conditions are no doubt recognised quickly and dealt with well;
  • several of the symptoms of PS are not unique to this condition, nor does PS always present the same way:  correct diagnosis is of course essential and often takes some time; and
  • despite doctors being as imperfect as ourselves, the death rate from infant PS has fallen from the majority a century ago to very low today (less than 1%).

Nevertheless, the medical world has some well-recognised problems, including some practitioners having a serious attitude problem and the number and nature of complaints about the way people are dealt with at what should be one of the most beautifully memorable times of their lives.

Aware parenting after infant surgery

At the age of just 3 years, children learn to use the word “Why?”

We humans are incurably curious, we want to understand what we see and hear.

Read this recent social media post by the mother of a pyloric stenosis child –

mum-dtr talk1My son was almost 9 weeks when he had his surgery.  It took them a long time to diagnose him; he will be 6 years old in a few weeks and his scar is about 3″ long.  He’s grown over the summer and has complained a lot about his tummy hurting.  That was part of the reason I joined the group so I could find out if other PS children experienced the same thing.  He also had a hernia repaired when he was 14 months old.  The scar bothers him when he gets asked what happened, but I tell him you were really sick and needed an operation to make you better.  Mommy loves your scar.  Then he smiles and laughs and forgets about the questions.

I wonder, what is your response to this post?  “What a lovely Mommy”?  “How nice”?

This was my response to this mother –

That interaction between you and your son reminds me so much of when I was his age!

My mother and I would have times like that, and my mum would use those exact same words.  But I never could never smile and forget to ask any more questions.  And when I asked more questions, the response was always, “We’ll talk about that sometime later” – but we never did.

150414-085And so from age 5 I increasingly felt embarrassed about the scar running down the middle of my belly, and whenever I asked the questions I had I felt fobbed off by pleasantries.  This deepened a then already real phobia that would trouble me for many years.

Today we know so much more and so I’m sure you’ll be sensitive to your son’s deeper personal feelings and be able to help him.  I still wish now that my mum (long passed on) had taken the initiative several times over my growing years –
1) showing she recognised my struggle instead of telling me off for showing any sign of it,
2) telling me about her part in and feelings about my first op in detail,
3) answering any questions I still had, and
4) discussing with me how I could work on my phobia.

Your son may grow up being very different from me, of course, but believe me, I’m far from alone in what I’ve just posted here!

Networking after pyloric stenosis (4): Emotional baggage

This post continues a series in which people who started life with infant pyloric stenosis (“PS”) and were usually left with a very gnarly or sunken surgical scar tell something of the psychological damage that came with that.  The social pages of Facebook include at least seven Groups of such people and the comments below are taken from these pages.

In their most formative years many PS survivors didn’t understand the reason for the surgical scar on their belly: their parents were perhaps embarrassed or reluctant to explain it because of their own inner pain over those pages of their life story.

Even during our honeymoon this pose shows how careful I was about showing my belly to the world.

Even during our honeymoon this pose shows how careful I was about showing my belly to the world.

When PS survivors feel shame about their scar, it’s typically because their personality is not extroverted and confident, and/or because they were not helped from an early age to understand the story of their PS and to “own” and wear their scar with pride and gratitude. Let’s face it, not many of like to be “really different”, and when we’re not helped to understand and appreciate the issues involved…

Here is the record of some of the emotional struggles PS’ers feel or have felt.

T B – c. 1990
I have gone through stages where I have become depressed over the scar left, however I think I am beginning to accept it more.  I’m an avid fitness enthusiast and weightlifter.  In saying this, I try to stay in shape.  However I still feel really uncomfortable taking my shirt off in public or around people I don’t know… the internet has made it easier.  It shows that there are “others” out there… I feel the scar is something I should be proud of instead of ashamed.

D C-S  1974
My ops were both in 1974, left me with a big zip scar down my front from sternum to belly button.  Wouldn’t be without it, but it has left me affected mentally and has left me with a variety of digestive tract issues.

Panama man

When infant surgery leaves your body looking like this man’s, only the very self-confident would ever feel at all comfortable

K D 1949
Gosh all your scars still look way better than mine.  I am 64, an old girl, and had it done at 12 weeks.  Huge vertical with big dots horizontally.  I’m in Australia and it is amazing to see how far surgery has advanced.  Have been embarrassed by my scar all my life and never wore a bikini.

J H 1962
I struggled with my scar for years… especially in school, sports, etc.  Always was embarrassed to take my shirt off, kept my arms folded, etc.  Now I’m proud of it and love to show it.
Growing up I used to be so embarrassed.  It’s something I had trouble overcoming… but finally did.

FV 1945
Because I had my op long ago when lots of the issues around it were pretty basic, I’ve had some emotional baggage, probably mild ptsd, shame and obsession for many years, now still in some ways an inordinate interest, although working on the issues and age have helped me heal inwardly.  Suspect there’s also some damage from the hunger and dehydration, as I lag behind all my 4 sibs in some areas.  But I’m glad I lived and don’t have the problems some have, esp. adhesions and serious bowel issues.

WW 1952
I’m 57 and had PS surgery at 3 weeks old and my mother told me that I never crawled.  I would only pull myself along on my butt.  (This behavior, I think, is very connected to the surgery.)  I did walk late, as I recall her saying.  For me, I think transitions have always been hard.  Safety is a big issue.  All my life, I’ve been a late bloomer.  For me, it’s definitely connected to the surgery.  I lost some confidence early on and doubted the power of my body.

parent-talking-to-childIt is noteworthy that most of these kinds of Comments are from people who had their PS surgery many years ago, when the surgical techniques were fairly crude and not cosmetically sensitive, hospital care was rough and ready, and parents did not know as much about child psych as we do today.  These Facebook comments are typical of other forum sites I have read.

However, the one comment (the first one) that is from a younger PS survivor shows that “emotional” baggage after PS surgery is not simply related to whether the surgery and scar were relatively recent or not. Again, many of us just hate being different.

These Comments also show that emotional, psychological and PTSD consequences can show up in different ways.

This series based on Facebook common interest sites also bears out that the medical alternative to treating PS surgically should be considered in every case – as it is in several developed countries.  This option like surgery is not always trouble-free, but will avoid most if not all the serious complaints and problems which fill the PS pages of the web’s forum sites.


During the 3 months after this post was written my wife and I were travelling, visiting family and friends and holidaying in the U.K. and Europe. My Facebook page records some of this wonderful and special time (accessible to Facebookers who “Friend” me).

This series of posts was continued soon after my return home.

Networking after pyloric stenosis (3): Diagnosis

Parents of babies afflicted by pyloric stenosis (“PS”) are routinely assured that after surgery their little treasure will be “a different (and hugely improved) baby”.  Often this is immediately true: instead of a baby vomiting him- or herself to death, PS babies often thrive and quickly reach the top of their percentile range.

But of course this is so only if the operation was –

  • without complications (like infection or a hernia), and
  • successful in opening up the pyloric passage (which it usually but certainly not always is), and
  • if the baby is not left with years of GERD (reflux) related problems, a rather common outcome.

Many with a personal experience of PS, whether as parents or survivors, do have ongoing problems –

  • during the immediate recovery period,
  • during the child’s first years and sometimes continuing lifelong, and/or
  • in adulthood.
  • These people often resent that the medical advice they received
  • denied these possibilities,
  • left them with false expectations that” all would be well”, or
  • skirted over the future  possibilities embedded in a list of “to be mentioned” items the parents had to acknowledge and sign before surgery.

And when problems did arise (sometimes within days, sometimes after some weeks or years), the typically rather obvious link with abdominal surgery was denied despite several research reports to the contrary.

Diagn palp.jpgAmong those who report having had a bad time with PS however, no group is as numerous or angry as those who experienced a diagnosis debacle, and in this post we listen to just a few of these parents, again from the several PS Groups on Facebook.

A L was born about 1985 and had a son in 2009
I was born with PS and my second child, a son, William was diagnosed with it at 4 weeks.  Luckily, having had it myself, I was well aware of the odds of my child having it, especially a son.  The pediatrician as well as the ER wasn’t extremely willing to diagnose PS until I advised them that I had also had it.  Prior to that, I got quite a bit of attitude and snubs…
It is very disturbing to me reading others’ posts that something that is so easily rectified is so easily dismissed.

E D, born 1984
It feels so nice to know I’m not the only person to have had this condition!  Even now doctors, midwives etc don’t know what PS is: awareness needs to be raised!  I was one of the unlucky ones and had my operation in 1984.  My mum had to fight with the doctors as they wouldn’t diagnose me with PS as I was a girl!  I had my operation at 3 months when my weight was lower than my birth weight – thankfully I’m here to tell the story!  Have had two little boys and thankfully neither of them have had it!

arrogant doc5L G – son born 2014
My son had PS at 5 weeks.  The doc said it was reflux, even though the health visitor said it was PS – because he was born at 36 weeks he said he couldn’t have it that young.

M G – son born 2010
My son was diagnosed at 5½ weeks old with PS in 2010.  It took doctors 5 days and numerous times of me arguing till I was sent to a new hospital to find out what he had.  My son almost died but had his surgery and soon bounced back.  I am so thankful he is better.  But I wish hospitals and doctors would check babies closer for this kind of condition instead of it being fobbed off as reflux all the time.

C L – son born 2014
My son had PS and had his operation at 5½ weeks old after me refusing to leave the doctors as they just kept prescribing gaviscon for reflux.  He had key-hole surgery and was instantly better!
Our surgeon told us our son had been left that long his body had used all its fats and was about to start using up its muscle.  Thank God he was seen when he was.

M K – daughter born 2013
self-harmMy daughter, now 10 months old, had her surgery at 5 weeks old, was misdiagnosed by 5 different doctors over a 5 day period and had 2 negative upper GIs… she weighed 6 lbs at birth and at 5 weeks old was 4lbs 10oz after no doctor would test her for PS.  We almost lost her from dehydration before I could find one that would… all because she was my second born daughter and they said [that the] odds were PS was not the cause for her projectile vomiting!
She is now experiencing bad reactions to milk.  Took her to the doctor and they had no explanation other than possible allergy symptoms from sensitive stomach MAYBE related to her having pyloric stenosis as a newborn.  But they have no clue.  I thought it was all behind us, as those few weeks back in May were the worst I’ve ever experienced.

D M – son born 2014
My son is 16 weeks old and had surgery for PS at 4 weeks after 3 days in a row of me going to the doctor, 3 days in hospital and then still saying it was a virus!!!  Long story short he had his op but still has some ongoing issues.  I have joined other groups and it is clear to see a lot more research needs to be done for PS.  The whole “normally happens in first born sons and everything returns to normal after 48 hours” is just not true in all cases!!!

F M son 2014
My poor boy has not been able to feed for over a week due to “reflux”, the hospital said.  I had doubts and have had him here 3 times (currently back in as we speak).  Finally after him losing 9 oz in 3 days, they have listened to me which I tried to get them to do the first time I brought him in – which was a week today.  I have said all along I thought he has pyloric stenosis but they brushed it off as reflux.  Brought him back today as no improvement with gaviscon and ranitidine.  They did an ultra sound and what does he have?  Pyloric stenosis like I said 1 million times.  My poor boy has been ill and sick after every feed, massive amounts and then made constipated with gaviscon and it’s not even f***ing reflux.
I am so angry it took 5 minutes to diagnose today and should have been done last week but they fobbed me off.  Now having to go to another hospital so he can have surgery a s a p to have the issue fixed.  Can’t believe they let it go on so long without listening to me and checking for this earlier, my poor boy has been through hell because they messed up and he has been made worse because they didn’t believe me.  Upset, angry, and relieved we finally have it confirmed.
Ladies, if you think something is wrong don’t give up, and keep pushing them… if I hadn’t we would have been sent away [for another week] and he would then have been treated for cow’s milk allergy, and God knows what could have happened because he hasn’t been getting anything from his feeds.
Can’t believe they wouldn’t listen to me and I knew what was wrong.

J S
arrogant doc4I had pylorics, so did my son and 16 other family members; unfortunately one did pass away but that was back in the 50’s.  And doctors are still saying it’s not hereditary.  lol  I think our family has proved them somewhat wrong. lol
Total fools!  The thing is, it was on my side and my partner’s side, as I said, 16 members, but [my son was] still diagnosed with gastro reflux for 3 months even with this history.  Total joke!
16 members across the family had PS, and we saw the symptoms straight away.  This stems over 55 years: my son is the most recent case and I was the 10th member but female, so not diagnosed as soon as usual.

L S – son born in 2007
My little boy had pyloric stenosis.  He was diagnosed at five weeks after a hideous time of not being taken seriously by the doctors.  I went back for the third time and refused to move unless they saw us again and self-diagnosed.  Finally they took me seriously.  Literally moments after his op he was a different baby.
He’s seven and a half.  Very pleased, yes.  It’s taken this long to talk about it though.

E T – son born 2014
My son is 2½ month old and 2 weeks ago we noticed small changes in his behavior.  Not as many poopy diapers, acting colicky, constantly hungry like [he was in] one really big growth spurt.  He was never a spit up baby, but a week ago he started projectile vomiting.  We went to his pediatrician twice, only to be told he had a very nasty virus.  We were told to give him clear fluids for 24 hours and the virus should work itself out of his system.  He then started vomiting blood… lots of blood-filled vomit.  We went to an after-hours clinic and they sent us to the hospital because he was dehydrated.  We went to the hospital, they did a blood panel, x-ray, administered fluids via IV, and sent us home with zofran.  The next morning he was still vomiting blood so we went back to the hospital and they took an MRI and discovered he had PS and referred us to a children’s hospital for the operation to fix it.  During the operation I cried, but I cried more after the operation since he had to wait 8 hours before he could eat anything and could only have ½ ounce and was crying uncontrollably because of hunger pains.  My heart hurt for him.  He is doing much better, being 4 days after his surgery!

Doctor woman makes a warningS Y – self born in 1985 (& father 1953)
I was born in Dec 1985 and by the second day I was projectile vomiting every time I was fed, and sometimes after my parents thought I was done I would go again for another round.  My parents both knew that something was wrong with me, my dad remembered his parents telling him what happened with him (they thought he had PS but it turned out to be a tumor bouncing up and down in his stomach)… My parents went to my pediatrician and he said that there was nothing to worry about – all babies throw up.  Then they went through 3 other doctors and they got the same story and a few even told them that the likelihood that I had PS was slim to none, this went on until I was 15 days old and my mom and dad decided to take me back to the hospital I was born at, went into the ER and found the doctor that saved my life.  He was a pediatric emergency surgeon.  I was in surgery within a few hours of being admitted so that they could get all the tests and get me prepped for surgery.  By this time I had lost 1 lb, which was huge considering I was only 6 lb 5 oz.  I was released just in time for my very first Christmas.
After my parents recuperated from my ordeal they talked to that surgeon and found out that if they were to choose to have another child that child most likely would have the same thing I had.  They talked and couldn’t go through it again.
My dad had his surgery in 1953…

The awful stories above would be understandable if PS were a rare condition.  But it is not.  The incidence varies a bit, but in developed countries ranges between 2 and 5 in every 1000.  This means most of us would know several people who carry a PS story.

It must also be recognised that PS quite often (but far from always) takes a week or more to become “full blown” and able to be clearly diagnosed by touch, x-ray and ultrasound scan.  And the health system as well as parents would not take kindly to an unnecessary surgical operation on a baby.

Yet the message is clear from the above stories and hundreds like it on the web.  It is also a simple message that should not be impossible to learn and remember, especially by the highest IQ endowed people in society.

  • Arrogant shirt1Too many parents get “attitude” from their GP and pediatrician: patronising condescension and dismissiveness, even when the parents have done their homework, have PS in their family or personal genes, and find their baby’s weight loss has become serious.
  • One would hope it is true that today’s trainee doctors are being taught more about people skills.
  • Many doctors seem to wait far too long before ordering tests, resulting in too many PS babies being near death and possibly damaged for life by hunger and dehydration.
  • From the countless available stories it seems few doctors advise seeking a second opinion or refer a baby to somebody more knowledgeable.
  • One would hope that those who are humble and self-aware do one of the above – with the result of no traumatised and angry parents writing to a forum site!

This blog has several posts on the treatment of PS by medication with atropine or Ranitidine, a non-invasive option that is 100% safe for PS babies born full-term and older than 2 weeks and is standard practice in several developed (but non-English speaking) countries.  Find these posts using the “Categories” box at the top right.

Parents who strongly suspect their newborn has PS have very good reason to insist on their doctor giving them respect, time, and clear explanations of their advice.  It may be helpful for them to take a supportive person along to the consultation.

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.

 

How we deal emotionally with infant surgery

Even after many years of reading the infant pyloric stenosis (“PS”) stories of patients and parents on web forums and blogsites, there are still some that still especially move me.  Notable among these are narratives that make me realise, This story could be part of my own story.

My mother and me, I assume a short time after my return home

My mother and me, it would seem a short time after my return home.

My parents refused to talk about the PS surgery I had as a 10 day old in 1945, no doubt in part because many parents did not talk about such things in times past, and I’m sure it was also because they were too traumatized by what actually happened.  I’ve written about this under the My Story tab on the header.

Recently I found a brief interaction between a mother and reader on a German web site. What would move a woman who chose the web-name of “Sewing-monster” to write about her baby son’s PS 5 years after the event?  Traces of the answer are not hard to sense.  Readers of German can read the brief interaction (starting at #6) complete with native idiom; what I give here is a readable translation.

Yes, an operation for one of our mini-mice is always terrible for the parents…

My Big Boy (who is now 5 years old) was operated on for the first time when he was just 10 days old.  Two days after he was born they said he had “adjustment difficulties”, but things went from bad to worse and then after a week they said “pyloric stenosis”.  By then he was only vomiting and keeping none of his food in.  Because he was supposedly too young for this illness and they were also uncertain about this at our hospital, he was referred to the University Hospital in Greifswald and then operated on at just 10 days old.  He survived everything well, slowly became accustomed to food, and at just under 5 weeks we were allowed to take him home.  But for me it was a nightmare.  I remember well how I just cried.

But today he is a squealing 5 year old, except that he still does not like to eat very much.

The second operation followed when he was a good 3 years old, for a congenital umbilical hernia which had not cleared itself up.  Luckily, that was only as an outpatient and after 4 hours I was able to take him home again.

Luckily my mouselet cannot remember any of these two operations.  He does sometimes ask us why he has such a large scar on his stomach.

Another mum, Bianca, replied –

How crazy!  Even this early!  You have already been through a lot.  It tears at our hearts when we see our little ones lying there like that!  I found the children’s ward “prison beds” especially terrible!  If I may ask, what does the scar look like to you when you see it so fresh?  In our case they made the cut in an abdominal crease and we hope it will be hard to see in later years!

“Sewing-monster” responded with –

The usual practice is to make the incision in a fold, and nowadays they’d probably use keyhole surgery.  But yes, he was such a “special case” that already now he has quite a long scar – certainly 10 cm.  It is quite pale now but you still see it quite clearly.

What stood out for me?

  • This mother’s son had his PS operation at 10 days old – exactly the same as I did.  I feel an immediate connection, just like I do with people who had any infant surgery as long ago as I did.
  • The first signs of this lad’s PS emerged only 2 days after his birth and it took a full week for him to be diagnosed and recommended for surgery.  From what I have read this time lag is quite typical, and in the little I know of my circumstances the same was probably true of my case.  Parents often wonder why this delay in diagnosis occurs so often, especially when a baby is so small and frail and the key symptoms of PS are very clear.
  • This baby spent several weeks in hospital after his operation.  We’re not told why; today most PS babies are discharged just one to three days after their surgery.  In 1945 two weeks in hospital was the norm and now wonder if I also had to spend longer there because my PS too was so early.  I have mentioned my mother’s regular commuting by steam train to get breast milk to me in the city hospital.  All this may or will have been part of what made my mother so anxious.
  • Mothers of PS babies routinely tell us that their baby’s extreme sickness and surrender for surgery were the worst time they have ever had to endure.  This German mother adds how upset she was when her son was returned to her care at home.  Many parents also mention this: besides their natural anxiety there is often continued vomiting, they now have a baby who has never yet learnt to feed normally, there is sometimes a wound infection or a developing hernia, and they feel deeply insecure about whether any or all the unexpected uncertainties portend failed surgery or further problems.
  • Like my mother and me, “Sewing-monster” and her 5 year old clearly care about aesthetics and their appearance; she comments on her son’s 10 cm scar (huge by most standards) and mentions that at 5 years old he often wants to talk about it.  Although my scar even today is less than 10 cm long, it also shows very clearly how little many 1940s surgeons cared about their patient’s future emotional well-being.
  • PS babies grow up as normal people do, but one wonders what's going on deep inside.

    PS babies grow up as normal people do, but one wonders what’s going on deep inside this young man.

    This German post also shows once again how important it is for parents to be able to air their pain, anger, and sadness, and how much most children who have had early surgery that they cannot consciously remember need to repeatedly hear and “process” their story and their emotions about it.

There is clearly a lot in this brief web exchange with which I immediately connect.

There is also a lot to instruct and reassure parents and patients, and to challenge the medical professions.

What goes on in a surgeon’s mind?

This blogsite deals with issues related to infant surgery, particularly surgery for infant pyloric stenosis (PS).  These are matters which can be intensely emotional and troubling to some, such as –

  • people affected by post-traumatic stress that is deep-seated, but the source of which may be a mystery hidden in the preconscious self;
  • parents who are led to believe they must choose between surrendering their perfect just-born firstborn child for surgery or lose their infant;
  • pediatricians and ped surgeons who are trained to cut, repair and sew and feel compelled to continue doing this even though they have learnt that less invasive and less traumatizing alternative treatments are possible – but not readily available
  • adults who have had infant surgery and whose parents were assured that this surgery would be quick, effective, and without any consequences, but who find they had or still have some unsettling abdominal or strange emotional problems that seem to be related to the condition for which they had the surgery but with which doctors don’t want to deal.

Over 40 years of work with people has underlined for me the advice that Ernest Hemingway once gave: “When people talk, listen completely.  Most people never listen.”  Although I am a better than average listener, I too sometimes don’t pick up some of people’s more subtle messages.

What keeps troubling me is that so many doctors live up to their reputation for aloofness and arrogance.  And these very clever people seem not to be able to listen, if the many online complaints of parents of children who had infant surgery and of survivors are even remotely valid.  Some will defend this as a necessary part of their stressful, life-and-death work.  The medical profession is large, well-educated, resourced and connected, and probably because of its scientific bent of mind and training, and because it is so locked into the enormous medical community, most doctors must find real listening and empathy beyond them.

Recently I posted here about the terrible choice parents face when they are told their child will need surgery to survive.  I based this post on what other parents have told the blogosphere, and this has helped me sense what my own parents must have felt in 1945 when I had PS surgery only 10 days after my long-awaited birth and as their first child.  Only since my parents’ passing some 20 years ago have I learnt to listen to their intense pain – and I’ve been affected by it all my life.

Then, just a week before the date of this post, my blogging friend and colleague at ReStory your Life posted an imaginative, perceptive and poignant piece, You Wanted to Survive: Writing to my Baby Photo, in which she conversed with a grainy photo of herself as a 4 – 6 month old baby.  She also drew on what she had learnt and sensed about herself at that tender age.

doctor01In the light of all this, imagine how pleased I felt when this week a surgeon’s post titled A tiny baby on a big table in a huge OR appeared on my search engine.  Dr Schwab writes with considerable openness, humility and humanity about what goes on inside him when he has to work on a tiny PS baby.

Despite my concerns about several of the ways in which PS and PS surgery are managed (and too often mismanaged) by the medical professionals, I “heard” something important in what Dr Sidney Schwab wrote.  He has a heart!  You must read his story.

How I would plead with doctors and especially surgeons to learn and prompt themselves to show something of their heart to those who seek their advice and help.  The best healing takes much more than the doctor’s physical tools of trade.