For several years since 2010 I posted weekly about infant pyloric stenosis (“PS”) and since then I have been writing updates and the occasional new post.
I am so grateful to the readers who have written in with something of their story, Others have given me the valued feedback that they appreciate my solid research and lucid and careful writing.
WordPress (which hosts this blogsite) also gives me feedback, and it’s not surprising that the top number of searches here have been for information about the long-term effects of PS and the surgery for it – about 15% of nearly 200,000! Using the Search box (top right on this page) will allow you to read all my blogs on this subject.
But here is an overview of this material…
The long-term effects of severe PS
Studies have shown that the severe malnutrition of a baby (which is far too common before PS is diagnosed and treated) can affect his or her memory and the development of the child’s motor skills and coordination. A link with autism and similar conditions has also been demonstrated.
Remember that these long-term effects must be coupled with the condition rather than its treatment.
Long-term effects of PS treated medically only
One of the facts about PS is a well-kept secret in the English-speaking world!
Some 80 – 90 % of babies with infant pyloric stenosis can be successfully treated without surgery, as has been proved by many trials and reports over many years in several European, North American and Asian countries. It takes several weeks of careful feeding together with medication to reduce the enlargement of the pyloric muscle. A 2005 Indian report concludes:
Home treatment with oral atropine appears to be a simple, effective, cheap and more acceptable treatment of IHPS… Treatment cost with oral atropine is almost negligible in comparison to IV treatment and surgical correction.
Newborns and small babies are normally considered too frail to risk medical treatment, as it may take up to a week to show whether or not it will be effective. In addition, 10 – 20% of babies who are put on medical therapy will need to have surgery after all.
I have not been able to find medical reports on the long-term outcome for PS babies who were treated medically. This probably indicates that this choice of treatment has no significant unfavourable results. Anecdotally, I have known several people who had PS as babies but escaped surgery – without any negative consequences of which I am aware.
However, there are also several personal accounts (such as this anonymous one) of people who seem to have had mild PS in infancy, grew up battling increasing PS-type problems, and consequently needed surgery in their adult life that was far more severe than an infant pyloromyotomy.
From everything I have read, it may not be easy for most “Western” parents of PS infants to find a paediatrician who will support them in choosing medical treatment as their first option. The “Western” medical world (esp. in English speaking countries) is “rusted on” to surgery in all but the mildest PS cases: the training, work-skills, professional control, medical protocols, and understandable fear of (1) stepping out of line and (2) the ever-present risk of complications and legal action – these all stack up against what is quite safe and routine in many other countries.
If successful, parents of a PS seeking medical treatment will need to remember (1) that there is a fairly small chance their baby will still need surgery and (2) that their choice will not affect the safety and recovery of their baby. Most cases treated with medication will result in the parents and baby avoiding the trauma of surgery – and also the fairly high chance that their baby will have to deal with any of a list of short- and long-term complications.
Long-term effects of PS treated surgically
As I have pointed out above and in other posts, surgeons in most developed countries like to push the parents of a PS baby towards surgery. The procedure today is quickly done, not difficult for experienced hands, and its immediate results are usually excellent: the usual result is much relieved and very thankful parents who will sing the doctor’s praises!
The short-term risks of PS surgery will be routinely listed at the parents’ consultation with the surgeon: complications with the anesthetic (very rare), complications with wound healing, infection and herniation of the wound or scar (more common but less than 10% in most hospitals), an acccidental breach of the pyloric inner lining (fairly common but usually dealt with immediately), an inadequate pyloromyotomy with the return of forceful vomiting and requiring repeat surgery or alternatives (1-5%), short-term vomiting (very common) and long-term reflux and other feeding challenges (treated medically or batted away as “unrelated”).
Many medical journal articles have acknowledged a raft of long-term symptoms that also seem to be linked with PS surgery. Some articles report on specific studies of these symptoms: I have sometimes been bemused by a report which lists many clearly related symptoms and then declares that these do not constitute “significance”. I think that would only be true for the doctors who repeat what is taught in med school: that PS has no after-effects.
Adhesions seem to be the least disputed and most common long-term risks associated with PS surgery – and any abdominal “procedure”. So much so that there are organisations and extensive websites like http://www.adhesions.org/ for the many who suffer with post-operative adhesions. A significant part of the emails and feedback I have received in response to my posts have concerned this problem. The good news is that although almost all surgery (especially to the abdomen) results in adhesions, the large majority of patients (including yours truly) do not find these to be a great problem. But the simple facts (common to many PS survivors) that my PS scar is sunken (and so more disfiguring) and that as a schoolboy I was easily winded in a stoush are both probably caused by adhesions.
Somewhat more seriously, adhesions can cause problems for dancers, models and bodybuilders, and still more seriously for not a few, chronic nagging or stabbing pain, organ dysfunction, and blockages in the abdomen. Many women have reported significant discomfort or pain during pregnancy as it affects their scar or adhesions. While none of these long-term effect of PS surgery are deadly they can certainly have some very unpleasant and even restrictive effects.
Many of us who have had PS surgery have what we might in general term “a weak stomach”. There might be continuing problems like GERD or reflux, involving the stomach and esophagus. IBS or extreme sensitivity to certain foods (often those high in acid) is also a common complaint. Gagging, frequent nausea or vomiting, sometimes several times a day or at the slightest provocation – even from tickling) is another group of symptoms fairly clearly linked with the pylorus.
Other abdominal problems commonly mentioned in posts and on forums include overeating and obesity, hunger and a fast metabolism, scar and stomach sensitivity and pain, abdominal muscle spasms, and occasionally the troubling “dumping syndrome” and/or gastroparesis. Some of these seem more likely connected with our inherited build and metabolism, but others clearly not so. Some sufferers have conjectured with some plausibility that their poor dietary practices could be due to their “on-off” switch for both hungry and full having been tampered with!
The final group of long-term effects relate to psychology and the emotions, and as these have also been dealt with in other posts we will mention them only briefly now.
It has been demonstrated that the body can recollect pain and separation from the time before our brain started to remember experiences: we call this our somatic (bdy) or pre-verbal memory. This has affected people who had early surgery involving less than general anesthesia and also a lengthy separation from their mother, both of which were widely acceptable medical standards until the later 20th century. While many sense no effects from what they experienced, others can link life-disrupting emotional and physical problems with the recognised signs of PTSD.
Today we can be grateful that the medical sciences have made great progress during the past century and more. At the same time, it must be recognised that those of today’s older generations who had early surgery may have been left with after-effects that are only now being recognised and better understood and managed.
Perhaps because I am a fairly sensitive soul, perhaps because of the severity of what I experienced, I have a painful although fairly private chapter in my life which I have been “re-reading and editing” in recent years. I have been much helped by the ready availability of medical and psychological information which has only come to light in recent years, and by the support of others who are travelling on on the same pathway. This is why I keep saying: Thank God for the internet!
- Note: Some readers will be interested to read Alison Cormack’s Comment below posted on 27 July 2016 about her son’s stomach cancer in young adulthood after infant PS.
- An exhaustive post listing the known and possible long-term effects of infant PS (the condition) and its surgical repair may be found here.