If you are the parent of a pyloric stenosis (“PS”) baby you were probably assured that the surgery to remedy this ugly condition is quick, simple and effective, and that the surgery would not leave your baby with any long-term problems.
Many of us who have had that surgery might agree, at least on a personal basis: PS affects about 4 in every 1,000 in the countries where this blog is read, and let’s face it, if there are millions of PS survivors who have significant ongoing health or wellbeing problems, we’d all know about it!
Nowadays, many websites that give information about PS are more careful in the assurances they give: typically they tell us, Almost all babies who have this operation recover well, and, pyloromyotomy is a successful operation and there are usually no long-term consequences, other than an incision scar. (from the BUPA health insurance site; underlining mine)
So what can go wrong as a result of the surgery, immediately and in later life?
I have already posted about the several parts of the answer to this big question, and my September 2011 post is one of the most read at this blogsite. Please use the Categories search box to find what you are after.
Here I want to give a brief overview of this subject, with links to some of the more detailed informative posts at this site.
Complications from the surgery
Problems resulting from the actual surgery are a well-known risk, and every surgeon and anesthetist will run through a list of warnings about this with the baby’s parent(s).
- The anesthetic is probably the most feared risk area but today it very rarely causes major problems or takes a life, although it seems minor problems are fairly common. Anesthetising a baby is a very special and exacting skill. Other fairly common warnings on the list of complications are –
- A breach of the inner lining of the pyloric passage during surgery (when it is immediately repaired); when very sometimes it is unnoticed during the surgery, it is a very serious matter.
- Incomplete pyloromyotomy also occurs in a small percentage of surgeries: the enlarged muscle is insufficiently cut or can regrow which usually means a second operation.
- Infection and bleeding in the wound are an ever-present danger, much reduced from the past, but still a hazard.
- Wound rupture and hernia formation were more common when surgeons worked (as too many still do) through an incision in delicate baby tissue that was already weakened by malnutrition. The result is more hospital care and usually more disfiguring scarring.
Disturbance of gastric function – infancy
Unhappy and vengeful bowels are an understandable and very common result of fiddling with a baby’s internal body system. It can take the form of continued (but not life-threatening) vomiting, reflux or GERD (gastro-esophageal reflux disease), irritable or unstable bowels, and unusually fast or slow metabolism (food processing).
Like many babies after a pyloromyotomy, I was insatiable and a picture of health a few months later – hardly a problem unless it develops to obesity as some find to their distress. Other survivors become fussy eaters which is far more trying for concerned parents.
Several small studies have shown that gastric function is indeed affected by PS surgery, but that this troubles only a small percentage to a significant degree. It is something most doctors don’t want to hear about – it is hard to diagnose the cause and therefore to treat.
Disturbance of gastric function – adulthood
As already mentioned, these effects can and all-too-often do continue into adult life. In adulthood it becomes even harder to link these problems with infant surgery, and also to recognize their cause and treat them.
But “anecdotally” I note (from 17 years of reading people’s stories via the internet) that there seem to be a great number of people who report abdominal problems after infant PS surgery, many of them able to trace their problems right through their years. The percentage of PS survivors affected may be relatively small, but this is still a huge number of very troubled people. I only wish I could let you read some of their accounts, but most are freely available to read on Facebook and web forum sites.
Adhesions are a related but distinct subject with which I dealt (again) in my previous post. Adhesions are usually (but not always) recognized only in adulthood, but unlike most other gastric problems they are easily linked with infant or later abdominal surgery.
The way in which conditions of infancy such as PS were dealt with until fairly recent years has scarred many who only now are recognizing and speaking up about this.
This is arguably a “sleeping issue”: the long-term effects of doing surgery on infants under age 2 years without the necessary pain management and involving lengthy periods of maternal separation is still incalculable. Who can tell how much of today’s anger, violence, depression and dysfunction in public and private life is caused by subconscious and unrecognised memories and undiagnosed traumatic stress disorder? We all know how unresolved stress can affect repatriated military personnel but discount or ignore how countless babies may have been affected in their later years by crude surgical and hospital processes.
Most medical doctors decline engaging with this subject, but the links on the right of this blog reflect only some of (1) those who report long-term problems after PS surgery, and (2) the well-informed and reputable psychologists and therapists who have recognized and begun to work in this area in recent years. The 2 pages of personal reports and discussion on one of the Patient UK forums are a good place to start; I have often thought it useful to contribute to this and similar sites.
It was my growing understanding of psychology and our inner self that has motivated me to read and write here – and several others elsewhere.