Having had my pyloric stenosis surgery at the very early age of 10 days is one of the very few things I know about that early chapter of my story.
My parents always batted away my questions, and being a shy and compliant child (my aggression is typically of the “passive” kind) the details of this vital episode of my life have sadly gone to the grave with my dear folks. But I’m “a brooder” and I have been able to learn a lot about my infant surgery by reading, networking and joining the dots.
The symptoms of infant pyloric stenosis can appear at any time during the first six months (and very occasionally even later), but usually between 3 weeks and 3 months. Sometimes the symptoms develop over several weeks, and sometimes very quickly. So having PS surgery at just 10 days means that my case must have been very clear, if not urgent.
In recent blogs I have written about the frustration many parents express about their doctor when the signs of a major problem with their baby were summarily dismissed time after time. Sometimes their problem was indeed a normal part of getting to know their new baby. But there are far too many stories of babies suffer professional neglect until their condition was such that the parents were told, “Your baby would have died if you had delayed another day”. I doubt this happened to me.
Pyloric stenosis is by far the most common condition in a baby that is (usually) dealt with surgically. It affects 3 – 4 in every 1,000 babies and its symptoms are usually quite clear, whether they take a few days or weeks to become clear and critical. Even better: you don’t need medical training to recognise and keep a list of these symptoms. All your doctor has to do then is run a few double-checks, like xray or ultrasound imaging.
- The first thing to look for is projectile vomiting. During or up to half an hour after a feed, the stomach turns your baby into a fountain, as the milk is expelled with great force, typically 1 – 4 metres across the room.
- The second sign is no loss of appetite. PS babies do not feel sick after their vomiting but feel hungry immediately, and tell you by crying.
- Weight loss is the third clear sign, so keep a close eye on your baby’s growth. Babies who cannot process their food cannot maintain their weight, let alone grow.
- Watch for signs of dehydration. A clear case of PS means dry nappies (diapers), a dry mouth, crying without tears, and the depression of the soft spot of the skull. Dehydration also makes the baby less active and more sleepy.
- With dehydration, the bowel movements also stop or become infrequent and minimal. There may be mucous and a green colour in any stools.
- Keep an eye on your baby’s abdomen, especially during and after feeding. Rhythmic movements from left to right show the stomach muscles are working (in vain) to move the food through the pylorus (“gate” or outlet) to the intestines.
- You may also be able to feel the swollen pyloric muscle, which in PS is about the size and shape of an olive. To try this, relax your baby by having it on your lap, keeping it warm and giving it sugar to suck; raise the legs to further relax the bared belly; with warm fingers press gently and feel over the stomach, usually in the middle to left and north of the umbilicus. But usually it will take a skilled person to feel the swollen pylorus.
- Having a compelling checklist of all or many of these symptoms will make it far less likely that a doctor or paediatrician will not take your anxiety seriously. If the information you gather is not very convincing, it should reassure you that the problem is not (yet) PS. If it is unclear and your baby has not shown wasting, it would be wise to consider trying alternatives such as medical treatment for reflux or PS rather than rushing to the operating room.
- If the signs are clear for infant pyloric stenosis, a pediatrician must make a formal diagnosis. You can demand this if your baby shows any of the clearest signs and symptoms of pyloric stenosis. The doctor who can feel the “pyloric olive” as part of a physical examination will probably still use a variety of tests including ultrasound, X-rays and blood tests. Ultrasound enables the pylorus to be measured to assess whether it is indeed swollen. An x-ray will show conclusively whether food is indeed blocked from passing through the exit muscle. Blood tests are needed to assess the blood chemistry work that is vital for a tiny PS baby to recover from dehydration and starvation, and to survive medical treatment and/or surgery.
Pyloric stenosis like many other faults of the infant abdomen is fatal unless treated. PS is probably the simplest of these faults to remedy, and it can be treated with medication far more often than the present Western medical world determines! In my day (1945) PS surgery was still seriously life threatening and deeply traumatic for all concerned. It is still hugely distressing for all parents, but usually only in passing.
Almost all of us who have had pyloric stenosis and infant surgery are also surviving it. But this chapter can cause trauma for the infant in later life, which may be why some of you are reading these blogs – and it’s the main reason I’m creating them.