When your baby had infant pyloric stenosis (“PS”), the surgery marked the end of a difficult time for you and your newborn treasure… Right?
If that’s true of you as parents or you as the baby, you belong to the truly blessed ones – at least in this respect!
Most doctors and websites tell the parents that there are no long-term problems after PS and its surgery (pyloromyotomy). Only a minority of the websites I have seen are a little more careful, assuring us that “most” babies will have no more problems. None go into detail about that “most”.
In 20 years of trawling the web I have yet to find any mention (let alone a posting) of a substantially sized statistical study of the long-term problems that can possibly arise after the medical or surgical treatment of PS, the most common disease of infancy that is usually treated surgically. This silence or disinterest makes it impossible for parents and “PS survivors” to know what to expect or look out for. It also makes it impossible to know how common the complaints are – they are certainly numerous online. Often it is also hard to know whether or not these complaints are due to PS, the surgery, or other factors such as heredity, environment, diet, or even attitude.
With all this in mind, there is a list of hazards and other conditions which may be possibly or likely linked with PS or its treatment. My list is based on following several online forum discussion “pages” during the past 20 years, currently those of Facebook, Medhelp, Patient, and Topix. What follows is a brief oversight; in coming months I plan to give more details and provide references for each of this list.
Here then is my list –
It is believed that 90% of us have adhesions, webs of tough scar tissue growing around and between our abdominal and chest organs, sometimes restricting and even choking their working, and sometimes tying them to the abdominal wall. Surgery and other significant tissue damage, not only to the abdomen or chest, will usually trigger the development of adhesions as the damage heals.
However, only a small minority of us have major problems with these adhesions. Symptoms are discomfort, pain, and disruption of the digestive processes. Adhesions can cause pain that some doctors misdiagnose as symptoms of gall bladder disease. They can also make cardio workouts painful and frustrate the hopes and dreams of body-builders.
Treatment is hazardous, as any breaking up of adhesions or surgery will almost inevitably give rise to more developing. Careful massage and diet management may bring some relief, and surgery should be regarded as only temporary relief and thus a last resort.
Because about 20% of PS cases have a family precedent and at least 3 locations on the human genome have been linked with PS, passing PS on to the next generations is a real possibility for some. PS is regarded as multi-factorial, with a list of possible suspects including heredity and other issues such as our gender, constitution and feeding regime, and thus no PSer knows for sure whether they will pass the condition on.
We cannot escape our genes, but being aware of the several symptoms of PS is an obvious advantage in getting earlier and smarter diagnosis and treatment.
Starvation and malnutrition have a serious effect on an infant’s fast developing brain. It is probably valid to hope that PS is diagnosed and treated promptly, but there are far too many sad and bad accounts online of this not happening.
In fact, one of the mantras the anxious parents get to hear after enduring an unnecessarily long diagnostic process is: If you’d delayed any longer bringing your baby here it would have died during the night. It seems such medical workers do not realise what that implies (if true): that incompetent or sloppy diagnosis has caused this infant to lose condition enough to be brain damaged if not dead.
Brain damage is hard to separate from genetic constitution, but starvation resulting in a reduction of more than 10% of the expected body weight in infancy has been associated with poorer learning abilities, especially those involving short-term memory and attention, and can affect a baby’s fine and gross motor skills.
Mothers’ reports online about whether and how their PS scar affected them during pregnancy differ. Many report no scar-related problems at all, while others do, and here too it is impossible to base risk factors on anecdotal accounts.
Reassuringly, nobody I have read has reported problems that affected the outcome of their pregnancy. Quite a number had times of tightness, discomfort, a tearing feeling, and even pain. Many reported that their scar’s appearance was affected: some only during the pregnancy, others found there was further lasting damage to their body’s appearance.
Many recommended massage with a suitable cream to ease discomfort and perhaps reduce the damage.
PS survivors differ greatly on how they feel about their surgery scar, and those who network online are often quite vocal about it. It would not be hard to link our temperament with how we feel about, handle and express ourselves about our visible imperfections! It is reassuring to network, as we are reminded that none of us is alone in struggling with our uniqueness.
Gender seems to make little difference, maturity and age often do, and some of us carry our scar shame feelings to the end. Here also it is impossible to assess numbers.
Many say they think little and feel less about their surgical scar, and some tell us they forget about it until asked about it during a medical visit. They carry it openly and have a tall story ready for the inquisitive.
Many others hide their scar as much as possible (easier for girls and women), hate it with a passion, and are so self-conscious about it that it is magnified in their eyes. Age often comes with greater self-acceptance, and with reassurance from swapping notes (and perhaps photos) with others.
Post-traumatic Stress Disorder is a set of reactions to a traumatic event. Until the 1990s, infant surgery was often done without the use of general or even local anesthetics, as the availability of suitable training and drugs was limited. So, many of the little patients were restrained, their agonising screams were ignored, and to make surgery easier they might be paralysed and a breathing tube inserted in their throat. Other surgeons did anesthetise the infants they operated on, even in the early 20th century, but the common belief until the 1990s was that “babies do not feel or remember pain”.
As if the surgery was not traumatic enough, to reduce the risk of infection babies were often isolated from their mother during their hospital stay, and post-operative care during much of the 20th century was usually between 10 days and 3-4 weeks.
Small wonder that the sick infants’ parents were also traumatised, resulting in an inability or unwillingness to ever reopen the book to this terrible chapter. And what about the baby?
PTSD is an extreme form of anxiety that we don’t easily bring into the open unless we decide on the need to do this. Only since the late 1980s have the pain and memory mantras finally been invalidated, and it has also been shown that we can carry pre-verbal or somatic memories of trauma which our mind cannot recall. Much valuable work on PTSD has been published and therapies have become available only in recent years.
GERD – Reflux – IBS – Hyper-acidity
Not only those who have had abdominal surgery in their infancy know about the misery that can be inflicted by a grumpy digestive system.
Doctors are often hard-pressed diagnosing what is causing a patient’s abdominal discomfort, and in fact some symptoms (esp. in children) cannot be linked with any known cause.
Several things are clear –
1. Although our digestive system may at times need medical or surgical intervention, it is an inter-related whole and does not always behave to the standard after surgical or chemical adjustment.
2. The most coherent theory about the cause of PS is that it is triggered by high levels of the blood hormone gastrin which controls the release of gastric acid (essential to digestion). High gastric acid levels are not changed by PS surgery, so we should not be surprised if this characteristic continues to dog us for the rest of our days.
3. High gastric acid is linked with a list of abdominal annoyances including reflux or GERD, IBD, gastric ulcers and cancers, and trouble especially in the adjacent parts of the digestive system, the esophagus and duodenum.
Like each of us, every scar is unique, depending on a list of factors ranging from the surgeons’ choice of technique and skills to the peculiarities and condition of our bodies and the actual healing process.
Some PS scars heal with a minimum of disfigurement, but many become deeply sunken during the teenage years and later, and older PSers’ scars often look like an attention-grabbing TV antenna or fat caterpillar.
Although no surgical scar can be removed without trace, some PSers are so self-conscious or angry about their scar’s appearance that they want it improved. Some scar correction is quite successful, and it gives us the satisfaction of having exercised our choice of surgeon and surgery, overriding something we cannot remember and in which we had no investment. However, some surgical scars cannot be revisited because of the damage already done to nerves and blood vessels. Antenna- and railway-track-like damage is usually too extensive to reduce unless it is part of weight reduction surgery.
Raising awareness of the issues
Thus the list of possible hazards after infant surgery is not insignificant.
Nobody will reasonably expect every doctor to have a detailed knowledge of every aspect of PS and the possible long-term effects of infant surgery. But it is inexcusable when paediatricians, surgeons, family medical handbooks, and information websites deny or muffle the truth!
The large online forum sites mentioned above are (as far as I have discovered) the only available and helpful sources of detailed information about this subject, a fact that is often remarked on by the thousands who use them. Every post may not be quite correct, but the sum total often satisfies the readers much more than their experience with the medical professionals.
Interested and supportive readers here are encouraged to do what we can together to raise the level of awareness of this subject, important as it is to those affected!
Tell something of your story and post it to MedHelp, Patient and Topix – the best addresses are listed below, and you usually do not have to register to post as a Guest.
Facebook is accessible to members only, but it has by far the busiest and most informative traffic. There are a dozen or so Facebook “Groups” dealing with PS, and others for other conditions of infancy. The largest Facebook PS Groups are “closed” – accessible only to those who register as members of that Group, thus encouraging trust and openness. The “Pyloric Stenosis Support Group” is the largest and best to try first.
Facebook – Pyloric Stenosis Support Group (non-member will need to join first)
The Index on this Blog’s banner, as well as the Categories and Tags boxes on the right of the Blog page, also include links that may be of interest.
– Fred Vanderbom