Several posts on this site have pointed out that doctors and surgeons form a powerful and often an overpowering elite. And often this is not a problem: in many cases “doctor knows best”.
However, the worldwide web is peppered with angry and frustrated stories from the parents of an infant pyloric stenosis (“PS”) baby who were totally unable to get their family doctor or paediatrician to carefully diagnosis their baby’s problem – even when the family history and/or the symptoms made their little child’s condition very clear. Often these parents will tell us they gave up on their doctor and went to the local hospital’s accident and emergency department, only to be told their baby was near death. Such stories are numerous.
This is not good!
A somewhat similar power-problem is all too often evident when parents are told that their baby needs a pyloromyotomy, the standard surgery for PS. It seems that the alternative to surgery, a course of medical treatment, is very rarely mentioned – and almost never recommended and followed. Of the many stories which parents have posted about their experience with a PS baby I can only remember one that mentions being told about and using the alternative to surgery.
Altough medical websites do often mention the “medical alternative” to a pyloromyotomy, every information page I have seen still dismisses it.
What is the truth about these two ways of treating PS?
I have posted about why many surgeons have made the pyloromyotomy their favourite surgery: it is quick, uncomplicated in the hands of an experienced surgeon, requires only a few days in hospital nowadays, and is often immediately effective. It’s not hard to imagine the satisfaction and kudos all this gives to a surgeon! My parents must have loved a photo taken a few months after my op which shows me as a very flourishing bub! This “over-compensation” seems to be very common: PS babies typically do very well once they can process their food!
There is a second reason why the pyloromyotomy is so strongly loved. Medical developments have made surgery (in itself) minimally traumatic for a baby. Pediatric anesthesia and pain relief are now quite standard and sophisticated compared with just 30 years ago. Before the late 1980s many babies were given no or minimal pain relief, many in especially the US medical world passed on the fiction that “babies don’t feel or remember pain”, and surgery could leave infants and their parents deeply traumatised, some for life.
Besides this, improved surgical equipment and techniques have greatly reduced the scarring and disfiguring effects of surgery, so that many babies who need surgery now are left with scars that are relatively small despite their having grown with the years. However, I fear that any scarring remains “uncomfortable” for a shy, self-conscious and introspective child or an image-conscious and introspective teenager.
The fact is that most PS surgery is avoidable. So for me the question remains: why is the medical treatment option with the drug atropine so generally dismissed?
My recent research has uncovered several clues.
In recent months I have found and visited PS websites in the main European languages. I thought it was interesting that –
- there are many more such sites in non-English languages than in English; and
- despite the “medical treatment” option being commonly and successfully used in many countries (incl. Denmark, Germany, India, Japan, Serbia, Taiwan and Turkey) in the earlier 20th century, and widely used throughout Europe and the English-speaking world at that time, most of the documents did not even mention an alternative to surgical treatment. Almost all the documents seemed to assume that surgery is the only way to treat PS unless a case is so mild that a “watch and wait” strategy can be followed.
There were just two exceptions. These documents gave data about the medical treatment option (using the muscle relaxant drug atropine sulphate) which I found representative of other reports I have read in recent years.
One was a Powerpoint presentation by the Italian Prof. Antonio Dessanti entitled, Hypertrofic Pyloric Stenosis: Pyloromiotomy versus Conservative Treatment [sic]. He oversaw 22 PS cases treated surgically and 15 by medication, 4 of which eventually needed surgery. All cases were treated successfully and it was found that the pylorus returned to a normal size 2-3 months after the onset of symptoms. There was no further comment on this.
A Pediatrics International report published online in June 2013 gave more detailed and what I also consider quite representative data. It was based on a Japanese study of 397 infants treated surgically and 188 treated with atropine, 8 given orally and 180 intravenously, 38 of whom later went to surgery. The success rate of atropine treatment alone was thus above 80%, and surgery was 100% effective despite almost 3% having severe complications. The medical treatment needed 13.5 days in hospital and surgery 8 days. There was no mention of deaths from either course: this again agrees with what I have read in many much earlier reports.
What did surprise me greatly was a recent undated and anonymous report entitled Spezielle Kinderchirurgie (Specialised Infant Surgery) reputed to come from the Surgery Clinic at Hamburg University in Germany. It dismissed atropine (medical) treatment with the following statistics: it requires 40 days in hospital versus 3-5 for surgical cases, mortality was 5% compared with nil for pyloromyotomy babies, and morbidity (complications) were reported as 17% having atropine intoxication versus 5% for surgical patients (including mucosal perforations, infection, and other setbacks). These figures would be enough to make any parent sign up for surgery – but they are not at all representative. I have posted about how medical treatment can be followed on an out-patient basis and with minimal or no mortality and without undue other risks.
Question: why would a web-based document report such and disturbing and totally unrepresentative statistics?
The fourth source I found recently was a German forum site where parents of PS babies could discuss medical versus surgical treatment – and two advised against it. This is the only such material I have ever come across, but it did give me reason to think! Here are the comments (in translation), the first from Andrea –
Cedric had projectile vomiting, diagnosed when he was 4 weeks old. It still annoys me today that we agreed to medical treatment; he still vomits, only sometimes but today even. My doctor even believes it could be because he had atropine. My youngest nephew had the operation – without any after-effects.
I would like Andrea to know that continued intermittent vomiting is quite common after PS, whichever way it is dealt with. “Joey’s Mommy” responded to Andrea –
I can tell you that from all I have experienced with PS I would also prefer surgery for my child to the medical treatment. The atropine treatment is lengthy, nerve-wracking and often not really effective. Despite the risks associated with surgery I would choose this course.
I must recognize however, that the number of infants I have experienced having this problem is too small to be really representative. There would certainly be families who have done well in the long run with medical treatment. Despite this I feel confirmed in my impression by your portrayal.
My comment on these two posts? Neither seems well-informed and thus they are unconvincing.
The benefits and difficulties that can follow from both surgery and medication to remedy PS are very real from what we can learn. In the light of the above, I now understand somewhat better the complexity of some medical choices, but none of what I have read and passed on here has been at all conclusive for me. The whole subject should be more thoroughly (and honestly) researched by the medical professions. And the choices should be more openly and fairly raised, explained and discussed.
Do you agree? If you were the parent of a baby dying with PS, what would you ask, choose and why?