Category Archives: Stories

Stories from and about those touched by infant surgery

Pregnancy post-Pyloric Stenosis

One of the most visited posts on this blogsite deals with how having had infant Pyloric Stenosis (“PS”) affects pregnancy.

This question must be answered by looking at several aspects –

  • Will the scar hold?
  • What do I need to know about adhesions?
  • Could I pass on my PS to my baby?
  • Reliving the past – and the trauma

Will my scar hold?

The short answer is Yes!

Our skin varies, as do our stretch marks, as do our scars.  Your scar may stretch and it may change in appearance, perhaps permanently, perhaps not.  Or it may stay much the same, which will put extra stress on the surrounding skin and underlying tissue of the stretching abdominal wall.  This may create a different pattern of striae (stretch marks caused by the dermis or outer tissue tearing) from the usual.  So there are several unpredictable possibilities, but one thing does not happen: your scar will not rupture.

When a surgical wound is healing it can rupture and need repair. Inadequate repair of the underlying tissue can cause a post-operative hernia which will sometimes heal without further intervention, sometimes not.

C 16w 2010But once scar tissue has matured (losing its redness takes a year or two) it is harder and tougher than normal tissue and far less likely to rupture than the surrounding tissue.  The stretching of pregnancy may cause itching, pain, or a tearing feeling, especially in the scarred area, but this won’t affect your baby, womb, or pregnancy, and your doctor can promise you this!

This is how one mother answered this question –

My niece has similarities to your situation, here is what happened with her.

Nothing bad happened to her baby and he was able to grow just fine – your scars will not affect your bub.

As her baby grew it stretched her scars causing shooting pains, the pains were only every now and then.  They only caused her to worry because she thought it may not be the scars and maybe it was something wrong with her baby.

Her scars are right through stretching right down the middle of her stomach in a T like form: she had an operation when she was born and then again when she was 5 and her scars are attached to her muscles.  Her stomach also didn’t grow very big compared to most pregnancies, so if your belly gets bigger than hers it may cause a bit more pain than ‘every now and then’ (but that’s just a guess based on no medical knowledge).

Hope this sets your mind at ease, both you and your baby will be fine. (– anon)

What do I need to know about adhesions?

All abdominal surgery triggers the growth of adhesions, a web like formation of tough scar tissue that develops between areas that have been exposed, cut or otherwise affected by the operation.  The organs inside our abdomen don’t like the fresh air and drying that occur during open surgery, nor the gas that’s used to inflate the abdomen for keyhole surgery.

A laparoscopic image of adhesions between the right diaphragm and liver

Everybody develops adhesions after surgery: these link different abdominal organs (e.g. the stomach and gall bladder or liver) or they link one or more of these with the inside of the abdominal wall.  This is noticed in only a minority of cases, but when adhesions make their presence known it can be very troublesome, causing pain and snaring, choking or otherwise disrupting the normal working of our abdominal organs in the affected area.  Adhesions are hard to treat, as surgery to remove them in affected people will inevitably trigger the growth of more of these nasty webs. I have written about adhesions several times – use the Categories or Tags search boxes to find them or go to Dr Google!

Pregnancy may make a woman with PS in her history aware of adhesions that had not troubled her before. She may feel pain or tearing in the region of her scar as her body changes; although this is uncomfortable it is a normal process and not hazardous, and will probably be a temporary although added discomfort of pregnancy.

Because each pregnancy has its own unique character in lots of ways, the pain and tearing sensations of adhesions can come with any but not usually all of her pregnancies.

The best advice for dealing with adhesion and scar pain and itching is what is usually recommended for pregnancy anyway: lots of lotion and lots of massage – which will help some and not others. The end result of the 9 months will we trust be well worth the discomfort and pain.

This is how one mother answered this question –

I am a 36 year old female, with 3 children.  I had my pyloric stenosis operation in 1974, at 6 weeks old.  My scar is now about 5 inches long, a cm wide and has 4 ‘stitch’ marks down either side.  It sits off centre to my right side, vertically.  And without a doubt it is attached to my abdomen at the bottom of the scar!  My mum said it was just about two inches long when first done.

Throughout childhood I complained that my ‘scar’ hurt and this was dismissed by the GP as part of growing!  At 18 I had my first pregnancy, and had a dip in my stomach as it swelled, with a feeling I can only compare to being jabbed with a pin.  It wasn’t so bad with my second child a year later, although the dip was there as stomach grew.  I had my third and last pregnancy at 33 years old, and my last baby was bigger than first two.

I collapsed with severe pain in my middle of right side 2½ years ago, and initially was diagnosed with kidney stones, but the urologist did not think the stones were big enough to cause the pain I was in.  (They were smaller than grain of rice.)  I am now awaiting an endoscopy with a gastroenterologist to see if I may have adhesions.

My scar is definitely pulling upwards towards my right ribs and I am rather unhappy that I have had to suffer for this long to get any answers!  I have been back and forwards between the specialists 4 times now as neither would pin-point pain, but if I were able to ‘operate’ on myself, I am convinced I could put my finger exactly where my pain is!  The pain is at best mild, but can get worse, usually 30-45 mins after eating.  It is constant, but I have learnt to recognise, offset and control it with painkillers.

I have been lucky that none of my children inherited the pyloric stenosis.  I am convinced that my life time of constant stomach problems, cramps, constipation, stabbing pains, nausea, etc etc has been a result of this condition, and wouldn’t wish it on anyone!  Good luck to you all on getting it sorted, and insist on help if your child continues to suffer. (– Kaz)

Could I pass on my PS to my baby?

This is indeed quite possible, and because of the quirkiness of genetics a mother who has a PS history is more likely to have a Py-baby than a father.  It is well-known that 4-5 boys have PS to every girl with it, but part of this means that those girls who do have it carry stronger PS-carrying genes.  Not nice…

The risk is unpredictable, as infant PS is “multi-factorial” and can be caused by non-genetic factors – labelled “environmental” in the medical world, although PS is never caused by what most of us think of as “the environment”!  A woman who belongs to a family tree with another (possible) case of PS is at higher risk than one with “one-of” PS.  So the likelihood of a PS mother having a PS baby varies from almost nil to about 20% according to the several studies that are freely available online, and some few mothers have reported passing on their PS to most or all of their offspring – up to 4 children in a few cases I have on file!

The key thing to remember is: everyone (mother or father) who has had PS can and should be better prepared to give prompt and the best possible care for their new-born Py-baby!

This is how one website answered this question –

  • Pyloric stenosis is the most common infant surgery in the United States after circumcision.
  • Pyloric stenosis reports in the United States have shown as few as 1 case per 3,000-4,000 live births to as many as 8.2-12 cases per 1,000 live births.
  • In general, pyloric stenosis affects approximately three out of every 1,000 infants.
  • If a child with pyloric stenosis is female:
    the likelihood of having a future son with pyloric stenosis is one in five.
    the likelihood of having a future daughter with pyloric stenosis is one in 14.
  • If a child with pyloric stenosis is male:
    the likelihood of having a future son with pyloric stenosis is one in 20.
    the likelihood of having a future daughter with pyloric stenosis is one in 40-50.

Reliving the past – and the guilt and the trauma

Sadly you won’t find this information on the PS-pages of our hospitals’ and paediatricians’ websites …

But having followed what not a few new parents have reported on internet social forums such as BabyCenter, Facebook, MedHelp, Patient, and Reddit, it is abundantly clear that some who have PS in their story struggle with guilt and PTSD, although thankfully not in a life-threatening form.  How many and how severely people are affected in this way is impossible to estimate, as this matter has not been given any academic or statistical study that I have seen.

The now adult Py-baby may find during pregnancy that they (father as well as mother) are painfully reliving their own past, fearful of passing their PS on to their new baby.  It is now known that the fears and deep emotions that many parents of a PS baby experience and convey to their growing child in story and emotionally can affect the in many ways exciting months leading up to the birth of a new person.  In times past, the traumatised parents would keep their story to themselves, which will often affect their child even more.  Sensitive and wise openness is far preferable to the old-time “stiff upper lip”.

Several things will help –

While most couples awaiting parenthood have never heard of PS, those who “own” their PS story will be far, far, far better prepared.  All infant surgery runs a high risk of a chain of unhappy events, including:

  • the horror of an eagerly awaited newborn infant vomiting itself to death;
  • insensitive, even haughty doctors who dismiss the fears and homework of new parents and draw out diagnosing their infant’s problem;
  • the hazards of anesthesia and surgery, increased in the very young;
  • post-operative complications and frustrations;
  • worries about long-term effects, usually brushed off by doctors but well-founded despite this.

Having recognised and to some extent worked through most of the fears and uncertainties is a great bonus.

Parents with a PS history also need to face the possibility of misgivings and guilt feelings that won’t be justified and will be unproductive, but may be very real and therefore also need to be processed.

As well as the above reasons, PS survivor parents preparing for the birth of a baby may be stressed by the possibility of bringing another “imperfect and damaged person” into the world, and by memories of the utter powerlessness inevitably associated with submitting one’s long-awaited newborn to a medical team and their procedures.

But PS parents will also know better than other parents that despite the above, PS is recognised throughout the medical world as the least un-desirable of all the conditions of infancy that usually require surgery.  The surgery by today’s standards in minor and routine, and almost always quickly effective. Any immediate after-effects will usually clear up within weeks or months, and any long-term after-effects (although usually not acknowledged) are manageable and never life-threatening.

The bottom line: I survived, and my baby will too!

Here follow four people’s observations on this subject area –

I am not so much nervous about labor as I am about being the best mother I can be and being the mother she needs.  I have a lot going through my mind right now.  My main concern is how horrible I will feel if she inherits pyloric stenosis from me.  Because of it I had to have surgery at 3 weeks old, it caused me to be so weak from not enough nutrients that I no longer had the energy to cry.  I am terrified of having to go through what my mom went through.  I keep trying to tell myself that she will be fine and everything will work out, but I am still scared... (– Jessica)

I used to work on a children’s gastrointestinal ward in London and would often see this. It’s a small op as far as an adult is concerned, but for any mum and little quite major. Make sure any questions you have going round in your head now, you write down. Make sure you ask all you want to ask, don’t be afraid as no question is silly, and they would rather explain to you what’s happening than have you confused and worried. (– Rachel)

I almost died before I was even born.  After my mother’s water broke and she was in labor for several hours, I had a bowel movement inside the womb – gross! – and the doctor said that was sign that I was in distress and not getting any oxygen so he performed an emergency C-section.

Then after I was fed for the first time I vomited it right back up.  And I kept vomiting after every feeding. I was diagnosed with pyloric stenosis… So I had to have surgery when I was just a few days old.

So my parents almost lost me twice before I was even a week old, and it’s easy for me to see why they – my mother especially – became overprotective parents.  And they passed that overprotectiveness on to me.  Even though I don’t have or want kids of my own, whenever I’m around kids I’m hyperaware of what’s going on around them.

I grew up knowing about all of the horrible things that can happen to children – rape, kidnapping, murder, etc. And it wasn’t just “stranger danger either. ( – Holly)

I had the surgery as an infant and asked in my first pregnancy if my baby could have the same problem.  I was basically laughed at so I never thought of it again.  I was definitely agitated over that because I would have always watched out for it.  It was hard just thinking about my baby having an IV/surgery and I really broke down when we got to the children’s part of the hospital and I saw the crib/bed.  After that though I was fine.  My DH and I held him for 2 days straight – we took shifts at night.  The hospital was so thorough and made us feel like Jacob was in great hands. (– anon)

Recommended: my previous post on this subject –  https://whatwewishwedknown.wordpress.com/2017/05/15/an-abdominal-scar-and-pregnancy/

 

Why your doctor may delay diagnosing your baby’s 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.

parent painBut if you or your parents suffered to the extent of being traumatised by PS, you join a sizeable club!  Social forum sites such as BabyCenter (or –Centre), Facebook, MedHelp, Patient 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…

Sadly not a few doctors (notably GPs and paediatricians) are arrogant and dismissive.
Parents who have done some solid homework on PS may be brushed off, those who have had a personal experience or previous baby with PS may be ignored, mothers who have nursed several earlier children are told their feeding technique is the problem, and first-time mothers with multiple PS cases in their family are told they are “nervous nellies”.

Despite key symptoms that seem to clearly confirm a PS diagnosis, doctors may well delay diagnosis, referral, and even ordering tests.  Rather they will “watch and wait” or prescribe medication and tell the parents to “come back after a week if symptoms persist”.  This sometimes continues for several weeks (yes!).

My evaluation?

  1. PS occurs in between 2 and 5 babies in every 1,000, so the several thousand stories I have read on the various online social media pages over more than 20 years are nevertheless a tiny proportion of the whole picture.  On the other hand, for every story that gets to (say) Facebook there would be several that don’t.
    A recent Danish study is the only large one I know of that’s been done to chart problems around PS, but this study only dealt with risk factors (“etiology”) and several elements narrowly related to the surgery (“morbidity”).
    I am so annoyed that nobody seems interested in doing a substantial professional study on many more of the questions involved with PS.  I’d so much like to run something with the Facebook network of several thousands but (a) it would be well-nigh impossible for a lay person to get enough participants, and (b) the results would not be statistically representative.  For useful data we’d have to have access to a less “slanted” sample based on hospital records – and then on that basis get enough participants.
  2. PS can develop very rapidly or very slowly, and some sometimes too mildly for surgery.  Many of the accounts on Facebook tell us of the operation occurring 4-6 weeks after the first signs of PS in a newborn, and that the baby was losing condition only in the last few weeks.  Others like me were diagnosed and sent to surgeon within days of birth.  Others again are diagnosed only at a dangerously late stage and after weeks of being fobbed off by medical professionals.
  3. arrogant doc5Doctors are increasingly trained in “the scientific method”.  This means that as a doctor you’ll ignore “circumstantial evidence” (like what people say and what you yourself can observe) and use only the evidence of imaging and blood tests.  And you delay serious consideration and diagnostic tests until you decide that running these tests justifies the cost, and then you wait for results.  I had my op in 1945, “the good old days” when (judging by the medical articles of the 1920s to 70s) the medical community usually and quite effectively went (a) by the physical signs which the parents gave the doctor and (b) what the doctor could observe: no soiled nappies, non-bilious projectile vomits, peristalsis, loss of weight and condition, dehydration, and “the pyloric olive”.
    Because of this trend towards being pedantically “scientific”, the cost factor, and the fear of complications and litigation, many doctors today try to avoid the op until it’s absolutely unavoidable.  The unstated attitude seems to be, “If the delayed diagnosis damages the infant, that won’t likely be evident for many years, by which time a link with the delay will be impossible to prove”.
  4. There are several organic (or organ-formation) bowel conditions of infancy that can at first be confused with PS.  This is especially so if the PS develops slowly and not many of the key signs of it have developed yet.  And then of course there are the more common non-organ-formation problems such as infection, reflux or GERD, and faulty feeding techniques.  Again, if the signs of PS are there, any delay could be damaging to the child and prolong the baby’s and the parents’ pain.
    And again: some PS never develops beyond a level mild enough to be treated with medicines, whether or not such treatment is effective in the long term.
  5. Sad to say (and judging by the evaluations by countless parents from all over the world) there must be far too many doctors who have a “god complex”.  This shows in their attitude to what the parents (and especially the mothers) report, even when they have done their homework and/or know their own and often their family history includes PS.
    Even worse, doctor friends have confirmed this to me, including one horrified parishioner who told me that on the first day of Med School (UNSW) his class was told that they now belonged to the upwardly mobile and indeed the elite of society.

Is it unreasonable to believe that much of the deep frustration and even trauma reported on Facebook is quite avoidable?  Of course not!

Mum w babeHow do troubled parents deal with this kind of situation?

  • Do your homework: google for the symptoms of PS and record the obviously significant things about your child: daily weight, input and output, indicative events, and general appearance and alertness.
  • Don’t consult your doctor alone: take your spouse, partner or other relative or friend for support, to convey your seriousness, and to remember and record what is said and done.
  • Don’t go with a preconceived idea of what you want, but don’t be snowed either.
  • Get a second opinion if necessary.
  • Go to the ER of the nearest children’s or general hospital if dissatisfied and if necessary don’t leave there until you sense it is right.

Always remember, you are your infant child’s only and best advocate.

Their future wellbeing may well be at stake.

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

Infant Surgery & PTSD – Links to Publications & Websites

Sometimes it is better not to know…

Some of those who owe their life to infant surgery in times past have become aware of the fact that safe and effective pediatric anesthesia and analgesia have only become almost generally used in developed countries in fairly recent years.

The medical mantra that “a baby does not feel, let alone remember pain” was widely believed and acted on in the medical world.  We can be thankful that many medical workers did nevertheless learn to work on infants using the available rudimentary anesthetic drugs and procedures. A powerful code of silence blanketed what was really happening and how widespread infant surgery without anesthesia was practised.

In 20 years of lay research and networking about this issue, I have yet to find a statistical report or journal article on the relevant facts and figures.  Understandably, parents were never told about the darker facts around their child’s operation, and those who dared to asked were most likely fobbed off – and certainly did not dare to share their concerns with their child in later years.

PI have networked with an uncomfortable number of people who like me are grateful to be alive because of early surgery but have always been mystified by living with some of the symptoms of post-traumatic stress.

The medical mantras  about infants feeling and remembering pain were publicly challenged and steadily corrected only since 1987. I have written other posts here about this.

Here is a reading list for those who are interested in learning more about this matter.

Again: sometimes it is better not to know . . .

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

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)

Dr 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)

 

Personal accounts

Kyle Elizabeth Freeman – Blogger at “Gutsy Beautiful Complicated”, Childhood Medical Trauma – 36 Years Later – https://gutsybeautifulcomplicated.com/2012/11/03/coming-to-terms-with-trauma-thirty-nine-years-later/kyle.elizabeth.freeman@gmail.com

 

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

Three responses to infant surgery

Infant surgery does different things to different people.

This post introduces readers to three men whose infant surgery recently prompted them to go public, each in his own way.

yay1Dave Outred went online to express his joy and gratitude for his full and satisfying life, apparently unaffected by the rather messy start to life he had.  After developing pyloric stenosis (“PS”), he was operated on twice in a London hospital in 1955 to remedy this rather common condition when he was about 6 weeks old: when it became clear that the first “procedure” had not dealt with his stomach blockage, it was repeated a day or two later, leaving him with two rather large and untidy scars.

But, he wrote on Facebook (to a “closed” Group) –

I say, be proud of your scars because you are a survivor!  I have had a great life: played sports for my town as a school boy, enjoyed camping and an outdoor life with the scouts, been married twice [currently 31 years], followed my football [soccer] team through good years and bad, semi-retired at 48 after many years of working 6 and 7 day weeks.  Lots of friends and a full life.  Recovery from P.S. is the start of a life you may never have had.

ButchBee02aJay Jacobs’ infant surgery was to deal with volvulus, a twisting of the bowels that like PS blocks the passage of food but can also quickly cut off the blood supply, causing gangrene and death of the affected intestines.  Perhaps because he was not expected to live, perhaps because cosmetic concerns rated rather lowly in 1957, perhaps because of his earlier weight problem, he has also been left with a very large and sunken scar.

Jay Jacobs found it harder than Dave Outred to feel accepting and confident about his disfiguring scar and count his blessings… until he found his niche.  Jay Jacobs always had a weight problem but in his later adult years he succeeded in beating this: he found diets and fitness programs that worked for him, participated in the Biggest Loser program on TV, and developed and promoted his discoveries, weight-loss and new-found wellness to become a successful entrepreneur!

Quite likely because of his accomplishments, he was also persuaded to rise above his negativity about his abdominal scar.  He appeared “topless” on TV and online, and wrote about his former “shame” and new-found confidence about his torso and story.

In mid-2019 the national free-to-air TV broadcaster in Australia aired a short video created by Alexander, a young man who was born with mild pectus excavatum, a “pigeon chest”. He was troubled in his adolescence by being singled out for comment, sometimes cruel, but also reports that growing up he was determined and able to rise above this, helped by his parents and closer friends, so that he can now accept his body as different but “OK”.

Henry Fox like Dave Outred also had PS and early surgery to remedy it.

Genes baby1It left him with a lifelong passion for the importance of medical research.  Many PSers realise that up to about a century ago, the diagnosis of infant PS was almost always a death sentence: the surgical remedies then on offer were so crude and horrific and so rarely successful that most parents preferred to see their little one simply expire.

Henry Fox knew this and also that there are still many conditions of infancy that although less common than PS need research funds and workers.  He wrote –

Owing to the type of research now carried out by Action Medical Research, I was able to undergo a small operation to rectify this and am now able to make the most of my ability to digest properly…!
Since then, Action Medical Research together with its most famous sponsor, Paddington Bear, have stayed very close to my heart.  I spent several days as a young child attending Action Medical Research’s Paddington Bear tea parties, over-indulging in a fair few marmalade sandwiches to help raise funds for their life-saving research!!  This association has stayed with me and it is rumoured that (aged 27) I may still possess a Paddington Bear duvet cover.

 Henry is seeking sponsorship for his running in the 2016 London Marathon (24 miles or 40 km on 24 April) to raise funds for medical research.

Nerdy MD2For many years now I have been reading and writing about the many issues around infant PS, and seeking greater recognition of the turbulence that affects a fair number of those affected by this rather common ailment.

I have been intrigued by the unity among parents affected by PS: those who write report as one that it was their most traumatic experience ever – and that all too often it left them feeling cheated in one way or another.

On the other hand, those who themselves have had PS respond and reflect on it in many different ways, and the reports above are typical but only samples of many very different responses.

Who do you think you are?

Recently I watched the 100th program of the popular TV series, Who do you think you are?

ponderAppropriately, it was a review of some of the most notable of the 100 stories to date.  Two utterly poignant segments joined “survivors” ardent about unearthing the fate of their ancestors and family members.  An Anglo-African woman hoped to find some mention of her ancestors who had laboured as African slaves in Antigua.  Another woman’s relatives were among the Jews trapped in Belorussia during the Holocaust: it was known that 2 girls in her family had been killed horrifically, literally by the hands of German soldiers.

I recalled the absolute apprehension and determination of the children of adoptive parents wanting to find their birth parents.

Some of the Who do you think you are? programs I have found to be rather “ho-hum” – interesting but somewhat lacking in power and passion.  But not so the heart-rending search for what exactly had happened in utter blackness long ago and faraway in Antigua and Belorussia.  Sometimes despite deep sadness or horror we just need to discover what we can find out.  We feel a deeply personal and profound bond with imprecise stories about our kith and kin, with the general facts about certain people in other times and places.

My own search has certainly been nothing as emotional as that of the two women with links to Antigua and Belorussia, but it’s been passionate just the same.

People02But it has also reminded me that my early PS, surgery, hospitalization and parenting have affected me more than many other infant PS survivors.  Most seem never to even think about their PS episode, some can’t identify or even care or want to know about “that scar”.  And others recoil at the mention of what their first weeks were like for them and their parents – like the Facebooker who asked me to delete a photo depicting the starvation that some babies suffer before they are properly diagnosed and treated.  We each manage our life stories in our own way.

My parents were people of bygone times who kept from me the details of the infant surgery I had when just 10 days old.  Before I was 6 years old, I became desperate to know what had created what I later learnt was a surgical scar, running down the middle of my young body, and how I should answer the inevitable questions of the curious.

During my growing years I picked up enough from conversations and books to understand the essence and effects of surgical work, and what pyloric stenosis was.  It didn’t take that long to learn how to avoid the inquisitive queries: I avoided most by covering up and lied away the rest.  Meanwhile I learnt what I could do to remove what I believed was a length of white string caught under my skin… the answer was of course: nothing.  Sure signs of inadequate parenting, an insecure child, an introspective nature, and (I discovered later) signs of PTSD and OCD.

A busy working and family life, plus the now understandable reticence of the then available information sources meant that between the ages of 20 and 60 I learnt little more.  But “the need to know” was kept alive by my continuing episodes of feeling embarrassed, obsessed, and self-harming because of my scar and story.

Q mark2The advent of the internet with its free, rich and growing flow of information and its potential for community-building was a major breakthrough and gift for me.  It gave me many details which I had never heard or fully understood, and which I quickly recognized as some of the missing pieces of my puzzle.

Amongst much else I learnt –

  • most of what I now know about infant PS – and that there is an adult form of this condition;
  • how infant surgery was usually done before 1987 (and still is in the case of many circumcisions);
  • that the danger of infection before the 1960s had a major impact on hospital protocols and procedures – with great effects on all concerned;
  • that trauma (another “hush-hush” subject at the time) affected many of the babies and adults of those times;
  • that PS and its surgical repair leave many with life-long problems, for some minor but for others very disruptive;
  • that many medical workers were and remain ill-equipped to understand and fully help those who seek their assistance;
  • that healing occurs in many ways and that we each seek or find our individual path; and
  • that many of my approximate contemporaries who have had early surgery and are willing to network report psychological and related difficulties very similar to mine.
  • that although my parents both died in the early 1990s without ever engaging with me about what were some obvious “issues”, I have discovered that the very little they did tell me and the main import of what I have learnt since are a perfect match!
  • that I am part of a large number of infant surgery survivors who share my passion to connect our past and present: I receive a steady stream or comments from readers who value my sharing, explaining and honesty about what I have learnt.

woman at PCI have enjoyed years of interaction with countless others who had older-times infant surgery and were able and willing to share their stories.  This blog has triggered many of these passing contacts – and a few deep and revealing friendships.  Forum and social networking sites such as Facebook, Experience Project, MedHelp, Patient, and Topix have been valuable also.  Facebook alone has more than a dozen PS Support Groups (although only a few see significant traffic) with over 700 members!

Something deeply personal which I still don’t quite understand but sense I should is a powerful motivator.  Whilst appreciating and respecting those whose problems are much larger than mine, I too remain both passionate and thankful about what I have learnt about “my story” which my parents kept from me.

I am now much better to join the dots between my past and present!

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.