When and how can pyloric stenosis surgery be avoided?
The medical world often delays diagnosing infant pyloric stenosis (“PS”) long past the time when an affected baby’s parents have worked out what seems to be wrong. Mum or dad may have had PS surgery themselves, or have had PS occur in their family, or they may have recognized the symptoms from when PS blemished friends’ excitement and joy over a newborn’s safe arrival, or they may have picked up the clear signs from their website research… or all of these…
Unbelievably, if you check out parents’ PS experiences via the web, you quickly find that far too many doctors are ignorant of this fairly common infant malady (3 – 5 in 1,000 babies) and its symptoms, or they pull rank on the hapless parents: “Hey, who is the doctor here?” or, “New parents are always over-anxious.”
Far too often, after several weeks and multiple doctor and even Emergency Room visits, the hapless parents are in effect told: “Surgery is the only way your baby can be saved. Just look at how much weight and condition your poor little one has lost. But don’t worry, the operation is safe, quick and easy – leave it to us!”
What else could anxious parents do but sign up for surgery?
The answer is that even then parents can do a lot if they choose to. It will take courage to talk openly with your medical doctor or pediatric specialist, even more nerve to stand up to the powerful prestige of the medical establishment, and still more toughness to resist possible power-play. (See my footnote at the end of this post.)
The facts are –
1 In several developed European and Asian countries, medical as opposed to surgical treatment of PS is the first option in most cases, and the final remedy for 60 – 90% of infants with this condition; medical journal reports vary but 80% seems the most common number of successful medical treatments.
3 This therapy is started and the parents are trained during a few days in hospital, after which it is continued at home with regular consultation.
4 Although treating PS by the medical treatment option takes longer, it is not invasive, less traumatic, more natural, less expensive, leaves no disfiguring and attention-grabbing scar, and has been shown to be just as safe as surgery (recognizing that today both treatment choices are quite safe but never completely without possible complications).
5 Both kinds of drugs reduce the over-development of the pylorus, allowing milk to pass the stomach’s outlet again normally. Over a few weeks or months the pylorus will return to its normal appearance. Surgery disables the pylorus enough to allow this normal process; medication does it more slowly and gently and with fewer immediate hazards and long-term effects.
6 PS most commonly occurs in babies aged between 3 weeks and 3 months, during which time it usually develops slowly: this gives the parents the best possible “window” to ask, persuade and if necessary insist that the paediatrician allow them to try medical treatment. They should do this on the understanding that if this fails and the baby’s condition deteriorates dangerously, the parents will consent to have the baby’s hydration and electrolyte levels corrected by intravenous therapy so that it can have surgery.
7 Babies whose PS has become life-threatening during their first days and weeks (before 3 weeks) will typically have little condition to lose without danger. In many cases those concerned should still be able to try medical therapy, but surgery will become necessary if the baby is already very small and frail and doesn’t start responding to medication in good time.
8 Parents should be aware that pediatric surgeons understandably like PS surgery: just read their enthusiastic comments and descriptions on the websites! Once they have mastered the exacting technique, pyloromyotomy is easy, quick, has very low failure and death rates, usually gives a quick and marked improvement, and it’s predictably greeted with great relief and heartfelt gratitude by the anxious parents. Again, just read what parents say!
9 Pediatricians, surgeons and hospitals in “developed” countries are very, very wary of anything that might result in litigation. Any lack of success that can be shown to have resulted from a failure to follow procedures that have been carefully established can damage a good name and career as well costing large amounts of time, money and stress. Many of us have experienced how already busy doctors will usually just go by the book and shut down any questions, discussion, let alone consideration of “alternative” treatment.
10 Because of this, parents who want to try to avoid unnecessary surgery and hazards for their little one would be unwise to expect a warm reception if they ask that medical treatment replace surgery for their PS baby. Several reports I have read recommend that parents –
(1) push for a diagnosis as early as possible if they are relatively confident of their baby’s problem, and
(2) insist that medical therapy be started as soon as possible as a pre-operative measure only – “Can we give this a try before we rush to surgery?”
In many cases (and not always), it will become clear only later that the PS and vomiting are indeed subsiding enough to make surgery unnecessary.
It’s good to know that the option of medical treatment for babies with PS is already practised by some pediatricians and pediatric surgeons in “developed” countries, as the occasional web post and report make clear. But we are a long way from the 80% medical treatment of PS which Japan and countries in Scandinavia report.
Having researched the long-term physical and emotional effects of infant and particularly PS surgery, and experienced some of the cost myself (see my previous and earlier posts), I will readily provide references for what I have written here: just email me. I’m doing what I can to spread the word that most of this so-called “easy and elegant surgery” is not only possibly hazardous and traumatic, but also in many cases unnecessary, and thus (at least in theory) abusive.
Infant PS operations should become the exception, not continue to be accepted as the rule.
Last week somebody I visited pastorally horrified me with his story of a shocking and totally unreasonable abuse of power involving him and his wife. When this man withdrew his wife from a cancer drug trial that had seen 9 of the 10 participants die, the researcher threatened to have the couple banned from every hospital in one of the largest Australian States; his wife died 12 years later from a heart condition… It underlined for me that many doctors, like many of all of us, do wonderful things with a sensitive and altruistic spirit, but that far too many seem rather prone to arrogance and abuse of power.
Readers interested in the issue of the surgical vs medical treatment of infant PS may also want to read two later posts on this subject. Please click on this link to the first of these consecutive posts.