“If my baby has had pyloric stenosis (“PS”) and had surgery to remedy it, will there be any longer term after-effects?”
Most medical professionals will brush this parent concern away: “No, once your baby recovers, you and your little one can put this episode completely behind you!”
If only this were true…
We must all understand this:
Surgeons’ competence and interest are in the immediate surgical “fix”, paediatricians may follow the infant’s story for a few months, but very little has been done to follow these “Py-children’s” stories over 10, 20 or more years.
However, the very few studies that have been done have identified several possible hazards. This blogsite has dealt with most of the most significant ones:
- continuing gastro-intestinal (“GI”) instability presenting as GERD or reflux, as IBS, or as a tendency to vomit (in over 50% of PS survivors as one study found) – all due to the high gastric acidity levels which helped trigger the PS in infancy and remains high lifelong in many or even most PS survivors;
- in a substantial minority (estimated 5-15%) of cases adhesions develop as a result of the PS surgery and will cause pain and distress to a significant extent;
- a minority of PS survivors take many years to come to terms psychologically and emotionally with their surgical scar – acknowledged as a lifesaver but growing more obvious with the years, in which they had no say, and which some parents decline to talk about;
- a very small number of older PS survivors have gone public about struggling with symptoms of PTSD diagnosed as resulting from the rigours of older style infant surgery, when many surgeons believed there was no need for anesthesia (“babies don’t have a memory”) and when long maternal separation was part of many hospital routines.
- There is at least one other area of possibly long-term damage that can come with PS and infant surgery. This is damage to the brain from starvation resulting from delayed diagnosis of PS, and/or repeated anesthesia, especially when the PS came with another hazardous condition of infancy.
This is the subject of this post.
Here follow some of the facts that have been established by medical research and reporting. I have included a link for every point noted but have collected many more reports. Readers are free to ask for my full reference list; contact me by email via the “About me” or “About this blog” tabs at the top of the page.
Fact 1: Single use anesthesia probably causes no long-term damage
A 2016 report clearly established that single and simple surgery for hernia repair resulted in no brain damage at 36 and 48 months. This report has been widely quoted to reassure worried parents. Lengthy or repeated anesthesia for more complex procedures was found to be damaging.
The anesthesia used in the typical pyloromyotomy (to stop PS) is part of one fairly quick and simple surgical procedure. However, almost all PS surgery occurs in the first weeks of an infant’s life. I have not found any study of the effect of a single short anesthetic episode on the brain of a very young infant.
So repeated surgery using general anaesthetic certainly does affect the infant brain. Prevailing opinion is that single use does not affect a baby, but the studies “establishing” this did not involve newborns but children at 3 and 4 years old! In matters of life and death general anaesthesia is a known and acceptable hazard. But contrary to the prevailing opinion of the medical work, most PS babies can quite easily be treated with medication. And it is in many countries. More targeted studies are needed.
Fact 2: PS-related malnutrition does have long-term consequences
A baby’s PS episode can easily result in significant starvation, as prompt and accurate diagnosis is sometimes difficult and sometimes suffers from negligence, lack of the required skills or unnecessary delay. A baby is developing rapidly and is wired to need regular feeding: this is especially true of the human brain.
Starvation and resulting malnourishment are very real hazards with PS, and several studies including an Australian one published in 2018 have shown that PS infants and children have significantly higher levels of brain damage than control groups. The cognitive (thinking, reasoning, remembering, imagining, or learning words), receptive language (the ability to understand information), and motor skills (the precise control of muscles in order to perform a specific act, whether in the classroom, in sports, or personal clumsiness) scores are most clearly affected.
I cannot but link these findings with the observation that several of my skills in these areas are clearly below those of my four siblings. This is not to deny that a PS survivor can never be a top athlete, accountant or academic – all I observe here can be questioned… but my lifelong observations remain!
A 1973 Scandinavian study found links between PS-caused starvation and below normal social and communication skills and described them as pervasive developmental disorders (PDD). It found that parents could recognise the symptoms before the age of 3 years.
But it added that if recognised early and given special remedial support, children with these difficulties will usually overcome the worst of their handicaps.
Fact 3: There is a possible link between infant PS and Autism Spectrum Disorders (ASD).
A large 2009 study conducted in Western Australia over 15 years found that PS babies did not have a higher incidence of ASD than a control group, whereas babies with many other birth defects did. But it mentioned that several other studies had found that infant PS also occurred significantly more often in children who were also diagnosed with ASD.
Another large study was reported in 2009: the Autism Spectrum Disorders Report, which is also readily available online. Like the WA Report, it found links between ASD and many categories of birth disorders, but not with PS.
As with the effects of anesthesia on the fast developing brain, the medical world is not agreed on this subject. This clearly is one of the areas in which more research (read: more funds) is needed – but of course there are many even more serious conditions that are crying out for more interest and funds for research. It has not been established that there is a common cause of IHPS and ASD (such as a higher incidence of defective genes and/or environmental factors in these children) or that one condition actually triggers the other.
Conclusion: Greater awareness and more studies are very much needed
My reading list on this subject area reflects a telling lack of clarity and agreement, and this is far from the only subject area of infant PS on which studies have arrived at conflicting and sometimes troubling conclusions.
In 2013, the Journal of Neonatal Surgery published a widely disseminated overview article marking the centenary of German doctor Conrad Ramstedt’s publication of his discovery of and success with the PS surgical technique that quickly became and has remained the standard way of dealing with infant PS. Dr Raveenthiran Venkatachalam’s remark (as “Athena”) on the subject of this post is worth including here:
Dramatic relief of symptoms following pyloromyotomy has lured many pediatric surgeons to declare a cure after one or two follow-up visits. Long term results are generally presumed to be good rather than proved by evidences. Two recent papers question this com-mon assumption. Using Baylay scales, Walker et al  assessed neurological development of 52 infants with HPS and 211 healthy infants at 1 year of age. Cognitive, receptive language and motor scores were significantly lower in HPS infants than in controls. It is unclear whether this adverse outcome is attributable to the dis-ease process or to anesthesia administered during surgery. Although further studies are needed to conclude whether this difference is of any practical significance, the findings of this study are certainly a source of concern. Saps and Bonilla , in a case-control study, studied 100 HPS patients and 91 controls in their late childhood. The mean follow-up period was 7.2 years. Nearly 25% of those who underwent pyloromyotomy in infancy developed chronic abdominal pain at a later age; while only 6% of the controls were so. Irritable bowel syndrome, functional dyspepsia and functional abdominal pain were more common in HPS group than in control group. Athena considers these two studies as eye-openers necessitating long-term follow-up of HPS infants.
What most doctors seem to remember about IHPS from their med school classes and textbooks is necessarily basic and general. If more is said, it’ll be even more easily forgotten. Medical science is such a huge body of information. Although PS is quite common, most medical professionals will see very few if any cases.
We can be thankful that in general PS and much infant surgery today have no major ongoing consequences. If there were any life-threatening conditions or obvious disabilities, the medical world would know about this and PS parents would not be silent.
One of the most traumatic events new parents can experience is finding their baby vomitting uncontrollably, forcing them to submit their newborn to life-saving surgery. We can be thankful that almost all babies and their parents nowadays survive pyloric stenosis (“PS”).
Once that crisis is behind them parents’ next question is inevitably: will this condition or surgery affect our child’s future? Reliable and informative answers to this question remain challenging and usually unreliable – but few doctors, parents, and survivors seem to be aware of this.
Because of this blogs like this one and social media discussions will continue to advocate for far greater awareness of the facts.
See also my post: Is a sick and starving baby affected for life?