“Not my baby!” Can we avoid infant pyloric stenosis surgery? (2)

When and how can pyloric stenosis surgery be avoided?

The medical world often delays diagnosing infant pyloric stenosis (“PS”) long past the time when an affected baby’s parents have worked out what seems to be wrong.  Mum or dad may have had PS surgery themselves, or have had PS occur in their family, or they may have recognized the symptoms from when PS blemished friends’ excitement and joy over a newborn’s safe arrival, or they may have picked up the clear signs from their website research… or all of these…

Unbelievably, if you check out parents’ PS experiences via the web, you quickly find that far too many doctors are ignorant of this fairly common infant malady (3 – 5 in 1,000 babies) and its symptoms, or they pull rank on the hapless parents:  “Hey, who is the doctor here?” or, “New parents are always over-anxious.”

This PS baby shows what dangerous dehydration, wasting and stomach peristalsis can look like

Far too often, after several weeks and multiple doctor and even Emergency Room visits, the hapless parents are in effect told: “Surgery is the only way your baby can be saved.  Just look at how much weight and condition your poor little one has lost.  But don’t worry, the operation is safe, quick and easy – leave it to us!”

What else could anxious parents do but sign up for surgery?

The answer is that even then parents can do a lot if they choose to.  It will take courage to talk openly with your medical doctor or pediatric specialist, even more nerve to stand up to the powerful prestige of the medical establishment, and still more toughness to resist possible power-play.  (See my footnote at the end of this post.)

The facts are –

1                    In several developed European and Asian countries, medical as opposed to surgical treatment of PS is the first option in most cases, and the final remedy for 60 – 90% of infants with this condition; medical journal reports vary but 80% seems the most common number of successful medical treatments.

2                    The treatment in these countries uses one or more of several drugs that control the stomach’s excessive acidity with PS (Ranitidine) or relax the pyloric muscle (eumydrin in its various forms).

3                    This therapy is started and the parents are trained during a few days in hospital, after which it is continued at home with regular consultation.

4                    Although treating PS by the medical treatment option takes longer, it is not invasive, less traumatic, more natural, less expensive, leaves no disfiguring and attention-grabbing scar, and has been shown to be just as safe as surgery (recognizing that today both treatment choices are quite safe but never completely without possible complications).

5                    Both kinds of drugs reduce the over-development of the pylorus, allowing milk to pass the stomach’s outlet again normally.  Over a few weeks or months the pylorus will return to its normal appearance.  Surgery disables the pylorus enough to allow this normal process; medication does it more slowly and gently and with fewer immediate hazards and long-term effects.

6                    PS most commonly occurs in babies aged between 3 weeks and 3 months, during which time it usually develops slowly: this gives the parents the best possible “window” to ask, persuade and if necessary insist that the paediatrician allow them to try medical treatment.  They should do this on the understanding that if this fails and the baby’s condition deteriorates dangerously, the parents will consent to have the baby’s hydration and electrolyte levels corrected by intravenous therapy so that it can have surgery.

7                    Babies whose PS has become life-threatening during their first days and weeks (before 3 weeks) will typically have little condition to lose without danger.  In many cases those concerned should still be able to try medical therapy, but surgery will become necessary if the baby is already very small and frail and doesn’t start responding to medication in good time.

8                    Parents should be aware that pediatric surgeons understandably like PS surgery: just read their enthusiastic comments and descriptions on the websites!  Once they have mastered the exacting technique, pyloromyotomy is easy, quick, has very low failure and death rates, usually gives a quick and marked improvement, and it’s predictably greeted with great relief and heartfelt gratitude by the anxious parents.  Again, just read what parents say!

9                    Pediatricians, surgeons and hospitals in “developed” countries are very, very wary of anything that might result in litigation.  Any lack of success that can be shown to have resulted from a failure to follow procedures that have been carefully established can damage a good name and career as well costing large amounts of time, money and stress.  Many of us have experienced how already busy doctors will usually just go by the book and shut down any questions, discussion, let alone consideration of “alternative” treatment.

10                Because of this, parents who want to try to avoid unnecessary surgery and hazards for their little one would be unwise to expect a warm reception if they ask that medical treatment replace surgery for their PS baby.  Several reports I have read recommend that parents –
(1) push for a diagnosis as early as possible if they are relatively confident of their baby’s problem, and
(2) insist that medical therapy be started as soon as possible as a pre-operative measure only – “Can we give this a try before we rush to surgery?”
In many cases (and not always), it will become clear only later that the PS and vomiting are indeed subsiding enough to make surgery unnecessary.

It’s good to know that the option of medical treatment for babies with PS is already practised by some pediatricians and pediatric surgeons in “developed” countries, as the occasional web post and report make clear.  But we are a long way from the 80% medical treatment of PS which Japan and countries in Scandinavia report.

Having researched the long-term physical and emotional effects of infant and particularly PS surgery, and experienced some of the cost myself (see my previous and earlier posts), I will readily provide references for what I have written here:  just email me.  I’m doing what I can to spread the word that most of this so-called “easy and elegant surgery” is not only possibly hazardous and traumatic, but also in many cases unnecessary, and thus (at least in theory) abusive.

Infant PS operations should become the exception, not continue to be accepted as the rule.

Footnote 1
Last week somebody I visited pastorally horrified me with his story of a shocking and totally unreasonable abuse of power involving him and his wife.  When this man withdrew his wife from a cancer drug trial that had seen 9 of the 10 participants die, the researcher threatened to have the couple banned from every hospital in one of the largest Australian States; his wife died 12 years later from a heart condition…  It underlined for me that many doctors, like many of all of us, do wonderful things with a sensitive and altruistic spirit, but that far too many seem rather prone to arrogance and abuse of power.

Footnote 2
Readers interested in the issue of the surgical vs medical treatment of infant PS may also want to read two later posts on this subject. Please click on this link to the first of these consecutive posts.

Advertisements

3 thoughts on ““Not my baby!” Can we avoid infant pyloric stenosis surgery? (2)

  1. wendy williams

    Such empowering information! I had no idea that the number of PS cases treated medically instead of surgically in countries like Japan and Sweden was so high. 80%. Fabulous! Your post is a must-read for any couple considering having children. If parents were informed beforehand, they’d have a much greater chance of avoiding PS surgery if that condition presented itself in their newborn. Consider sending this post to parenting magazines, hard-copy types and online zines. It’s priceless! I also appreciated the statement: “I’m doing what I can to spread the word that most of this so-called ‘easy and elegant surgery’ is not only possibly hazardous and traumatic, but also in many cases unnecessary, and thus (at least in theory) abusive.” Such a true and brave statement. I so appreciate your talent of synthesizing information and making PS, in all its many aspects, understandable to the public. Bravo!

    Reply
  2. MCROWELL

    HA. my son had pyloric stenosis. my doctor prescribed him ranitidine before he was officially diagnosed. it did NOTHING. had we waited any longer for the surgery, my child would have died. as for medical treatment costing less than surgery- i paid $50 for my son’s medication and NOTHING for his surgery. welcome to Canada.

    Reply
  3. Fred Vanderbom Post author

    Thanks for letting the readers here benefit from your experience. I am glad that all went well, and that Australia and Canada both have a good and accessible health system.
    Dr Ian Rogers has long experience as an academic and surgeon, so I would not undervalue his general advice.
    It must also be remembered (as this Blog has often stated) that –
    1) medical treatment is effective in only some 80% of cases,
    2) patients who do not respond to medication must be submitted for surgery before their life is endangered,
    3) those babies who are treated medically must be selected for this according to strict guidelines, and
    4) medical treatment has been the standard and surgery the exception in many “non-Western” countries’ management of IHPS for many years.

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s