Having your new baby go through surgery, however “minor” in the eyes of the medical world, is always harrowing for the parents. Those who have written about this will almost always say it was their most traumatic time ever, and some continue to suffer post-traumatic stress.
Remember that this surgery almost always follows a period of your infant being sick and steadily losing condition, followed by what may be a deeply upsetting period of doctor visits, medical tests, specialist consultations, and typical hospital admission procedures – with baby’s condition steadily going downhill…
Remember also that doctors are human: far too many treat their fragile patients and parents poorly, and diagnosis is too often avoided or faulty, too often ending only at a near-terminal crisis. All this adds to the stress and strain.
Add to this that surgery for infant pyloric stenosis (“PS”) surgery is often promised to be a “quick fix”. Although many of these little patients do recover promptly and quickly more than catch up on their weight loss, other PS babies take months or even years to find their balance – and some few never do.
Add to this that many surgeons seem to regard their responsibilities as ending when they leave the operating room, and that many GPs simply don’t engage with parents who have a baby with a feeding problem.
What are the main problems parents may have to manage after PS surgery?
Issues that arise during or because of the surgery will usually be managed by the surgeon or their staff. These include incomplete myotomy (splitting) or the over-complete splitting of the swollen pylorus ring-muscle (rare but damaging to the stomach and/or duodenum), bleeding, infection, and dehiscence (reopening of the incision).
Of these, an incomplete myotomy will usually take a few days to reveal itself, and sometimes the correctly split pylorus will actually regrow and re-stenose during the weeks and months after the pyloromyotomy.
Often this leads to a new round of uncertainty, tests, waiting, delays, etc, etc. And often parents are advised to “wait and see”, trying to manage the return of the PS with careful dieting and perhaps medication. Sometimes this is successful and avoids further surgery, sometimes not, and there are many accounts of people living with “mild” PS for many years before insisting on re-surgery.
Continued vomiting and irritability are often a big challenge for babies and their parents after PS surgery. Even minor surgery causes tissue damage and pain and is stressful for a baby, and anesthetic drugs take a week or more to fully clear our system. Parents are normally advised to expect their baby to be unsettled for some time. Warnings signs that need medical attention include a temperature rise, wound bleeding and infection, and a return to projectile vomiting that causes a clear loss of weight and condition.
Wound herniation shows up as swelling and perhaps widening of the wound. It means that some of the repair work under the scar is failing. This should be reported promptly; sometimes this needs immediate attention, and sometimes a wound hernia will be treated conservatively and heal with time.
Statistically, PS surgery is the most common non-elective surgery done on infants. (Sadly, circumcision is by far the post common elective “procedure”.) Pyloromyotomy is also the favourite of many surgeons: for them it is typically minor, quick, and routine, and it comes with the ego-boosting transformation of horrified into hugging parents who are then assured that “this surgery has no long-term effects apart from having a happy, healthy baby”.
Because PS is relatively common, afflicting between 2 and 5 in every 1,000 babies (and that’s a lot of people), it is obvious that the possible problems are far from normal. But very little has been done to assess the frequency of short- and long-term problems that can be linked with infant PS and/or its surgical repair.
It is important to realise and remember that while infant PS was a virtual death sentence before the Ramstedt pyloromyotomy was introduced in 1913, the deathrate is now below 1% in developed countries.
However, the rise of social internet forums has shown that the number of people reporting short- and/or long-term problems after infant PS is not insignificant. The most used is Facebook, which has several “closed” forum Groups for PS-interested members: several thousands post their stories and questions every year, and more than 650 now adult PSers have done the same (building from 2007). My original blog dealing with PS matters has recorded more than 150,000 visits (building since 2011).
Readers will work for far greater awareness of this ugly and traumatising condition, and its possible short-term consequences.
The possible long-term effects will be discussed here soon.