When I wrote this post there had been only one response to the question I posed at the end of my previous post: If you were the parent of a baby dying with pyloric stenosis (“PS”), and you knew of the choice you could make between surgical and medical treatment, what would you ask, choose and why?
Since then my web searching and reading have yielded two more sources which are worth considering.
One is from Michelle, who wrote a forum post about her infant daughter’s hemangioma (“strawberry birthmark”) and the very different responses to this by two mothers who had also had a child with a facial birthmark. One had opted for prompt surgery and the other had waited and seen her child’s blemish almost disappear by age 7. Neither child had ever shown being bothered by the surgery or growing up with the birthmark.
Michelle set these two quite different stories next to her own, as she had been “really self-conscious … particularly as a teenager” about the disfiguring scars from the PS operation she had had as a baby.
Three different people and three different reactions to a very personal issue!
The second document I found was a Spanish powerpoint about PS surgery – which I was able to get translated. Further to what I stated in my previous post, Dr Christian Pérez Pulgar actually presented in a fair way the alternative way of treating PS: by a course of medical therapy. The careful attention he devoted to this was of much interest to me –
- Before the widespread use of Pyloromyotomy, hypertrophic pyloric stenosis was treated medically with atropine.
- However, the excellent results associated with the Ramstedt procedure [pyloromyotomy] have led to a virtual abandonment of the non-surgical treatment.
- According to theory, the [drug] Atropine temporarily suppresses muscle contractions and decreases gastrointestinal peristalsis, and therefore breaks the cycle that caused the symptoms.
The key details of the most recent article advocating the value of the medical treatment alternative (and published in 2005 by a team of Japanese doctors) follow on the next screen –
- Dr H Kawahara used atropine intravenously (0.01 mg / kg / day) in 19 patients 6 times a day, 5 minutes before feeding.
- Treatment with atropine was successful in 17 of the 19 patients.
- The total average hospital stay was 13 days, the range being 6-20 days.
- The duration of the intravenous and later oral atropine therapy was 7 and 44 days respectively.
Sadly, Dr Pulgar does not give us his personal evaluation or comment. However, from his first screen (as above) and the further content of his document, we may conclude that he concurs with the strong advocacy of surgery for all but the mildest of PS cases.
Where does all this leave the parents of a PS baby?
- As my blogging colleague Wendy Williams suggests, most parents of a PS baby will not have the time or tranquil mind to dig up the facts, weigh up what they discover, and then muster the confidence to discuss these matters with a time-pressed and typically single goal-oriented and controlling doctor.
However, up to about 20% of PS babies have a parent or close family member who has been through PS surgery and these parents will be far better prepared than most – and also well able to guess at how their child is likely to handle the future wearing surgical scars.
- My years of researching this subject have shown very clearly that while the majority of those who carry a surgical scar were troubled by self-consciousness and self-hatred in their growing years, and many of these people still don’t like it, there is also (what seems) a minority who profess never to have been bothered by being scarred in their infancy. And then there seem to be just a small minority (as far as I can assess that) who have significant to major ongoing effects from their surgery and/or the way their closest relatives failed to manage it well.
- Laparoscopic (or “keyhole” or “minimal access”) surgery can in theory greatly reduce scarring from surgery. However,
(1) not every baby has access to this, as it requires considerably training for the surgeon and team, is more costly, and not available in every hospital; and
(2) because scars resulting from infant surgery grow with the patient, the already disfiguring pitlike scars left by laparoscopic surgery will usually become at least 3 times larger and more obvious and disfiguring.
We are each very different and unique. And we know ourselves best.
Therefore if parents have reason to think that their baby may in time be significantly affected by the scars they inherit from their battle to survive, they should (if they can) seriously consider pressing their doctor to support them in trying the medical therapy alternative to surgery. It will take longer and will cost them more patience and perseverance, and perhaps some more money. But they can be assured that in about 80% of cases (see Dr Pulgar above and also my previous post) they will be successful, they may well save their child trauma and other emotional pain, and their child will probably thank them one day in a most wholehearted way!