Pyloric stenosis and reflux (GERD)

Parents of a pyloric stenosis (“PS”) baby often face one or both of two questions –

1                    Does this sick baby have PS or reflux ?

2                    My baby’s had surgery for PS but is still sicking up – is this still PS or is it reflux ?

This blogsite’s main post on telling the difference between PS and reflux (or GERD or GORD) was written 30 months ago and is one of the most often visited.  That’s two good reasons to look at the main facts again.

First, some necessary information about GERD.

GERD stands for gastro-esophageal reflux disease (the American spelling), and GORD is the English equivalent.  What is it ?

Reflux or GERD in babied ((c) Mayo Clinic)

Reflux (GERD) in babies – (c) Mayo Foundation

If the muscle ring at the lower end of the esophagus (the tube that takes our nourishment down from the throat to the stomach) is unusually relaxed, weakened, does not close when it should, or becomes herniated, the gastric (or stomach) contents are forced back up the esophagus.  But this fluid material will now have become acidified, and so it will burn and damage  the lining (the mucosa) of the esophagus.  What we feel as a result is usually described as heartburn, chest pain, regurgitation, and nausea.

Reflux can be minor or very, very unpleasant but in itself it doesn’t kill.

It is believed that in the “Western” world between 10 and 20% of people will suffer with GERD at some time or chronically.  Serious and continued GERD can cause other problems, ranging from coughs and esophagitis to ulcers, scarring and even cancer.

Almost everyone will sometimes experience passing reflux.  Depending on its seriousness, GERD can be managed with diet, antacids and other medications.  Some of GERD’s causes may require surgery.

Babies have an immature system, including their gastric tract, and for this reason most babies will “sick up” – some occasionally and some very much.  Anything that upsets a baby’s stomach is likely to affect its working, whether it’s mother’s lovely spicy dinner flavouring her breast milk, or abdominal surgery during which some strange tools and gloved fingers fiddled with its insides.

So it’s not hard to realize that almost all babies will continue to vomit and have reflux after abdominal surgery such as a pyloromyotomy.  This may happen just a few times, or during the days of post-operative recovery, or for some weeks or even months and years, or baby may (now) have a chronic problem.  Unless the baby’s immediate family are all troubled by GERD or have never known a sign of it, it may be hard to get a sense that a PS baby’s post-op GERD is either a family trait or was probably triggered by the surgery.

My reading and listening have shown me several things –

            1. Little substantial medical research has been done and published about this common problem.
            2. The very few small samples that have been reported have all found (1) that PS people have a higher rate of gastro-intestinal “conditions” – but (2) hasten to add that the number is not significant.  My logic and reading make me disagree!
            3. Pediatricians and peds ward workers will usually warn parents to expect some post-op vomiting and GERD.
            4. When GERD continues, most doctors dismiss it as resulting from the surgery.
            5. Those affected by PS, surgery and GERD should be aware of the fact that (like every part of our broken society) the medical world engages in what might be termed “power play”.  Doctors like their many kinds of authority, hate it being questioned, protect each other, work and talk together, etc.  They also dislike spending time that will affect their day and the patients they must see: issues (and thus people) will not always be adequately dealt with.

Now about pyloric stenosis…

First some major differences between GERD and PS.

          1. GERD in itself is not deadly but untreated PS usually is – and quite quickly so.
          2. Linked with this, GERD will slow down weight gain and growth but PS will usually reverse it.
          3. Although both result in vomiting, GERD is caused by the stomach’s entrance muscle ring and PS by the exit muscle.
          4. In GERD the muscle ring is not 100% effective but will usually develop; in PS the muscle ring is stimulated to over-develop, a process that can usually be stopped only by medication or surgery.
Pyloric stenosis in babies

Pyloric stenosis in babies

Many of our medical advisors (GPs and paediatricians) will not diagnose a baby with PS (or even consider this) until all other possibilities have been eliminated.  This is correct: we don’t rush to infant surgery unless it is necessary.  But this sound principle sometimes masks diagnostic ignorance or incompetence.  Countless hundreds of outraged parents have written up their traumatised stories on the internet to warn others that their baby could have died before their doctor might have diagnosed PS.  They usually tell us they went to another doctor, or (quite often, it seems) created a scene at the local hospital’s Emergency Dept.

Soon I want to revisit the different degrees of infant vomiting caused by the pylorus.

As stated above, true PS will usually kill.

The baby loses first weight and then condition.  Bowel motions and then urination will slow and stop.  The stomach and esophagus will be damaged by the acid and violence of its vomit – which may show traces of fresh or old blood.  The baby will not only be ravenously hungry and starve, but it will also visibly dehydrate, and (unseen to the eye) its blood chemistry (make-up) will become so messed up that it will move into sleepiness – this being the sleep of death.

If in any doubt, see your doctor or the hospital, and if still in doubt about the outcome, insist on doing a test feed, and having blood tests and imaging tests done (xray, ultrasound).

If your baby is not showing these terrible symptoms, before or after PS surgery, its problem is unlikely to be PS.

gerd-or-ihps-table1I recently came across the story of a 10 month old boy whose distressed mother suspected that an incomplete pyloromyotomy was responsible for his continued projectile vomiting and his being only half the weight normal for his age.  Was this a case of continuing PS and doctors denying an obviously incomplete pyloromyotomy?  Or was it severe GERD that was responsible?  A truly independent doctor was very much needed to decide.

Parents and patients will sometimes find such people-of-integrity and compassion hard to find.

Advertisements

5 thoughts on “Pyloric stenosis and reflux (GERD)

  1. Wendy

    Wow, I really feel for parents dealing with these issues. The chart that you offer will help. The fact that you are affirming the parents’ concerns and encouraging them to get the help they need helps. How very frightening for parents, especially watching their baby in distress. Statements like “[reflux] . . . doesn’t kill” are priceless; knowing the truth will take a lot of stress off parents. Your final example of the case of the 10 year old boy shows how complex and scary the situation can get. I’m so glad you are out there giving parents the straight-talk lowdown. I’m also impressed with your reference to the “broken world” of medicine. So important to face reality and realize that sometimes, there are “power plays” going on and as a result, we need to take more extreme measures to get what we need.

    Reply
    1. Fred Vanderbom Post author

      Thank you Wendy for another thoughtful and encouraging response. My recent interaction with a number of people has underlined again that it’s not only impersonal medical websites that mislead, that the sad and bad stories on the web are not from grumpy old men, or about just one doctor clearly not having a good day or cut out for his job, but that the whole selection, training, information-giving and power structure of the medical world so often becomes a huge problem for parents going through a most trying time.
      I feel as powerless trying to change this as the parents of a sick baby obviously feel when confronted by this all-too-common and ugly reality, but I’ll do what I can to spotlight the facts and push for greater recognition of a whole galaxy of things that can and should be done much better.

      Reply
  2. Wendy

    Well, now that your book is out, you’ll blog about it, I hope, letting people know how they can get it. Is it very expensive? In any case, you are touching a lot of people with your work and doubtless, many more with this new publication.

    Reply
  3. Shirley

    This was very informative. In my family we have inherited the ps. For at least four generations. We were told that it happens in boys. Low and behold, myself and two of my daughters had ps. My daughter who had it now has a son who had it also. My other daughter hasn’t had kids yet. Quite a few cousins have also had it. It seems to be a very strong gene in our family.

    Reply
    1. Fred Vanderbom Post author

      Thank you for your response Shirley. You are certainly at the extreme end of the range when it comes to the genetic factor of PS! It continues to amaze people like us that there are so many stories of PS symptoms being brushed off with medical mantras like “not a boy” and “not first born” – even when one or both parents have had it or it’s previously occurred in one of the parent’s families. At least your family now has a very solid dossier of evidence to back them up in suspecting future cases.

      Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s