Helping parents in pain

Parents whose baby has had to be go to surgery for conditions like Pyloric Stenosis are agreed on one thing: this was the hardest time of their lives.

It’s so sudden and overwhelming

Surgery comes to some babies in a crisis.  Some conditions with which we are born need immediate correction.  Others like pyloric stenosis (“PS”) which I had and which apart from hernias is the most common condition of infancy requiring surgery, arise at varying times during the days, weeks and months after birth.  Others again like a cleft palate can be dealt with at an appropriate time.

I had PS at 10 days (and some have it even earlier than that) and it would have been a heavy blow to my parents.  They had been though a very hard time during World War 2, PS wasn’t (as far as I know) in the family, and they had probably never heard of it despite it being fairly common: many parents only learn about PS when their baby is in sudden and deep trouble.

PS becomes a “shock and awe” experience, again unexpectedly and suddenly for many.  Sometimes the vomiting becomes more frequent and violent over several weeks, and sometimes it is so mild that the baby can be coaxed through it without an operation, possibly with medical drugs and guidance, and certainly by careful feeding and much patience over several months with a sicky baby.

But in my and a fairly large minority of cases, the PS started early and the severity was obvious from my weight chart.  How utterly distressing it must have been for my parents to have their long-awaited first baby vomit everything with a force that by many accounts can cause much mirth later (“I would puke across the room”) but which for them meant that their baby was vomiting himself to a quick and ugly death?

If PS causes considerable weight loss in the first month, surgery is usually the only real choice: the baby is too small and frail for a time trial and the possible failure of the medication option.

My parents would have had no time to prepare.

It’s often hard to get a good diagnosis

Although my parents maintained their traumatised silence about my sickness to their graves, I have been able to research and conjecture towards a fairly plausible reconstruction of what happened.  One of the reassuring things is that their doctor apparently did not mess around with his diagnosis: within a few days of my weight chart dropping it was on the rise again and my first operation was over, all within my first 10 days.

This sadly is far from what many parents experience with PS today.  Why?

Because the medical world is so vulnerable to the legal liability culture prevalent in many countries today, because there are some dozen medical conditions in babies which involve vomiting, because no parent wants to hear that their “baby didn’t need that operation after all”, and because of the patronising ethos of far too many doctors.

The effect on parents can be very distressing and quite unforgettable.

The medical world can be so cold and clinical

How would you feel if you had been physically and emotionally scarred by a PS operation, as perhaps had others in your family circle, and you had successfully raised several other children through their infant years – only to be told that you’re being over-anxious, or that PS doesn’t occur in later babies or in baby girls, or (in as many words) that “I’m the doctor and I know better than you”?

Many parents report having received good, caring, informative and sensitive help from their doctor and specialist, but understandably and sadly, the great majority of reports on the web about PS diagnosis are from very frustrated and disappointed parents.

There have been some very telling and poignant stories written by medical doctors about their experience as a patient with a serious illness.  How would it be if all doctors had to submit to an actual (not simulated) patient experience as part of their training, and if pediatric specialists had to meet with a selection of parents who had been through a hard time when their baby or infant had had surgery?

An operation on my baby is scary

Having to hand my baby over to a nurse, anesthetist or surgeon is much, much harder than submitting to surgery myself.  Just read with me the numerous accounts from parents who have done this: as one they say, This was the hardest thing I’ve ever had to do.

I have had several surgical treatments during my adult life and they come nowhere near being “traumatic”.

Younger readers must also realise that the way infant surgery was done mid last century was quite crude and distressing compared with today.  Very basic or even no pain control, large disfiguring incisions and stitches, lengthy and isolating hospitalisations… look up my recent posts on the relevant decades.

Some of the parents who posted about their experience with a PS baby said they were greatly reassured by the comprehensive, careful and patient explanation of the baby’s condition, of what the anesthesia and the operation involve, and of what to expect during the recovery period and the following days.  Knowing and preferably having a little time with one or more people who have been through the same experience is also most helpful.

“Positive psychology” is increasingly advocated today as an effective way of managing predictable traumatic events (like war) that often result in debilitating PTSD.  Essentially, it means working through what can be expected to happen and teaching management strategies.  How I wish my parents had been helped by “positive psychology”!

There is a tendency for some parents and doctors to belittle the experience of infant surgery.  True, for many parents PS surgery seems simple, quick and straightforward – once it’s behind them.  From the doctor’s viewpoint this will also be true, as PS is not only the most common but arguably also the easiest surgical condition to fix once it’s diagnosed.

But dismissive talk or writing will do nothing to reassure anxious parents.

“What did I do wrong?”

When a brand new baby becomes dangerously sick and needs surgery, it is almost inevitable that the parents will wonder whether this was caused by something in them (genes or an inclination) or something they did or failed to do or eat.

Several answers to these questions have been reported, but some of these “findings” have also been contradicted.  There can indeed be a genetic factor in PS, even a strong one, but apparently not in the majority of cases.  Gastrin (a stomach acid) production in the mother, perhaps caused by her constitution or by stress, is a strong candidate (though not without challenge).  Breastfeeding and maternal age seem to be in the “perhaps” category.  The studies and discussions continue.

“My baby is not perfect”

More personally, from my knowledge of my mother I am sure that she would have had a deep sense of personal failure and disappointment at her first child, who looked so perfect and beautiful at his birth, was after only 10 days marked by a series of ugly red scars right down the middle of his tiny little belly.  And she could have guessed that if this child was anything like her sensitive and perfectionist self, he would grow up having great difficulty accepting this so-prominent blemish.

I know that my mother and I are not unique in having to struggle to overcome this feeling of ugliness and imperfection.  I just wish that parents liable to suffer this kind of pain would seek and been offered help for themselves and their affected children.

In the past: a stressful recovery time

One of the things I sometimes overheard my mother telling others about was the stress of having to maintain the breastfeeding of her first baby over a distance.

I believe (research and conjecture again) that she had to travel to the hospital every day to deliver expressed milk: this meant a 25 km journey by two steam trains and return.  For whatever reason (usually fear of cross-infection, but possibly also post-War conditions or poverty) mothers in those times were often in this kind of situation.

Remember also that often no physical contact was allowed between the mother and her baby, again because infection killed so many hospitalised infants, especially those weakened by illness.  And finally, remember that in the 1940s babies were usually kept in hospital for about two weeks after surgery.

Is it any wonder that my mother and I were both deeply affected by the circumstances around PS surgery as catalogued here?

I am very grateful that although infant surgery will always be difficult for parents as well as the little patients, there have been huge improvements in many of its facets.

And I’m so thankful that I can recognise that I have been able to work through the lasting effects of my infant surgery through the various stages of my life.  Especially the last decade has seen the formation of networks of similarly affected survivors, breaking through the taboos, silence and loneliness.  The release of volumes of medical reports have shed much technical and historical light on what were for so long regarded as secrets of the medical world.

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4 thoughts on “Helping parents in pain

  1. Mark

    It often takes a long time for us to pull back from our personal pain and traumatic memories to consider the other side of the coin, what our parents faced and how they made the decisions that they made. During the era we had our surgery, questioning a Doctor was very difficult, he gave his judgement and that was that. Little concern was given to finesse, cosmetics, consequences. To the doctor, it seemed to be more of a simple did they die or did they survive outcome. And to the parents, in the midst of the shock and panic of the moment, “just keep him alive” probably seemed a reasonable goal.

    I am another who has never broached the topic of my surgery with my parents. I have recently been pondering if I should, and to what goal. I know you have some regrets about not ever opening the topic with your parents before they passed. Any advice for me while I still have the option?

    Reply
  2. Fred Vanderbom Post author

    Thanks for your observations, Mark.
    Yes, many feel much more equal and confident in the doctor-patient relationship today, but when a baby is close to death (as many with pyloric stenosis are by the time parents and the baby’s condition are taken seriously) the urgent still often crowds out the important.
    My parents died in the early 1990s and my mother’s memory died even earlier. At that time I knew I had infant surgery related problems but did not realise they were part of PTSD: I thought I must be a freak and avoided the possibility of additional shame if my parents were to find out who I really was.
    I encourage troubled infant surgery “survivors” (like myself) to learn as much as they can about the nature and background of their pain, and then to ask and discuss with their parents the questions that may have gnawed at them for so long, I wish I had been able to do that, but alas, all those who knew my story have died, as have my medical records.
    Being able to know and “own” my story would have made such a difference in my younger and less tranquil years.

    Reply
  3. Wendy

    Thank you, Fred, for your sensitivity to the parents. My ps surgery was certainly my mother’s biggest parenting challenge. She made this clear! To almost lose an infant has to be up there in the top 5 most difficult parenting moments. To lose a child – almost unimaginable.

    Reply
    1. Fred Vanderbom Post author

      I am very thankful that I have never had to go through either experience. But I can sense just something of what it must be like when I read the heart-rending stories of the parents of a very sick or dying child. And I remember my parents telling their little tribe about how common infant accidents, illness and death were in their younger years and reminding us of family members who died very early.

      Reply

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