People who have had a close experience of infant Pyloric Stenosis (whether their own or as a parent) are often bewildered and perhaps bemused by the medical mantra that “You’ll have a new child – there are no known long-term effects”.
We can be thankful that it seems that this well-meant but misleading assurance is usually (but far from always) valid, both in the short and long term. Because Pyloric Stenosis (“PS”) is rather common (2-5 in every 1,000 babies is a huge number world-wide) the widespread lack of awareness of and interest in the possible long-term effects of PS is probably a good indication that ongoing problems affect only a relatively small number – but again, worldwide this is a huge number. The web forum pages of Facebook, MedHelp, Patient, and Topix bear this out. So do the more than 100+ visits each day to my original Blog (started in 2010).
If only our experiences and the facts agreed with that mantra! This Blog is all about doing something about “What we wish we’d known” (its web address).
WordPress (which hosts my older blog) also gives me feedback, and it’s not surprising that the top number of searches there have been for information about the long-term effects of PS and the surgery for it. In this post I overview the material I posted about this to my original Blog. In the coming months I plan to post progressively to this Blog, which has an Index Page (see the banner at the top of this screen) to enable readers to overview and access its contents.
What we wish we’d known and what we want to know about the possible long-term effects of PS… please read on…
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 its memory and the development of its motor skills and coordination. A link with autism and similar conditions has also been demonstrated. These long-term effects must be coupled with the condition rather than its treatment. They underline the importance of PS being better known and diagnosed – by new parents and especially medical professionals.
Long-term effects of PS treated medically only
One of the facts about PS seems to be a well-kept secret!
Some 80 – 90 % of babies with infant pyloric stenosis can be successfully treated without surgery, as has been shown in many trials and reports over many years in several European, North American and Asian countries. It does take several weeks of careful feeding together with medication to reduce the enlargement of the pyloric muscle – a fact no parent will welcome and most pediatric brush off (they understandably like a simple procedure that changes the universe for a very sick baby and its anxious parents, besides being quick and easy to perform! 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.
However, newborns and small babies are normally considered too frail to risk medical treatment that may take up to a week to show whether or not it will be effective, and 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 may well indicate that this course has no significant unfavourable results. Anecdotally, I have “met” several people online who had PS as babies but escaped surgery – without any negative consequences of which I am aware. However, there are several personal accounts (such as this anonymous one) from 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.
And another consideration: I also have on record the fact that many survivors would have loved to start life without disfigurement – if that was a choice (which it probably wasn’t in my case)!
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. If successful they will need to remember (1) that there is a fairly small chance (10-15%) that 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 surgery-related complications.
Long-term effects of PS treated surgically
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 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 (rare) and wound healing, infection and herniation of the wound or scar (these fairly rare now), an accidental 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), short-term vomiting (common) and long-term reflux (wearisome even when treated medically).
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 if you belong to the majority that says it has no after-effects worth mentioning.
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, in the large majority of patients (including yours truly) these cause no great problems. But the simple facts that my PS scar is sunken (and thus more disfiguring) and that as a schoolboy I was easily winded in a stoush are caused by adhesions.
Somewhat more seriously, adhesions can cause problems for dancers, models and bodybuilders, and for not a few, 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.
The most common complaint of those with PS in their history is what we might in general term as “a weak stomach”. Arguably the clearest cause of both infant and adult PS is high gastrin (a blood hormone linked with digestion) and gastric acid levels, and PS surgery does not change this. So there may well be continuing problems like GERD or reflux, involving the stomach and esophagus. IBS or extreme sensitivity to stress and/or certain foods (often those high in acid) is also a common complaint clearly linked with a PS past. 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, and abdominal muscle spasms. 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 are (or will be) be dealt with in other posts (and in our two older Blogs – see the Links / Blogroll column) 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 memory. This may well have affected people who had early infant surgery involving less than general anesthesia and also a lengthy separation from their mother, both of which were medical standards until the later 20th century. While many sense no effects from what they will have 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. Sadly, this better awareness id still vary patchy if the feedback to forum sites and this Blog are concerned.
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 the same pathway. This is why I’ll keep saying: Thank God for the internet!
– Fred Vanderbom