Having surgery as a baby can have ongoing effects: immediate, middle and long term problems are far from unusual. This is more often the case with the most serious forms of infant malformation and malfunction like a congenital diaphragmatic hernia, a gastroschisis, or Hirschsprung’s disease.
But even relatively simple problems such as infant pyloric stenosis (“PS”), the most common reason for infant surgery in the first weeks and months after birth (as well as one of the easiest to remedy), still today all too often cause ongoing frustrations – for the parents at first and for patients in later years. As I have mentioned in a recent post, this gets little to no attention in the countless medical articles and reports which are available online.
After the surgery
As we are routinely informed nowadays, there is a list of risk factors associated with all surgery, such as a failed procedure, collateral damage, infection, the anesthetic, problems affecting the lungs or heart, allergy, and wound rupture. With PS surgery these are not common but any setback is unexpected, unwanted and upsetting when it occurs. Hernias are fairly common after some of the surgical techniques used to treat PS.
It is not abnormal and to be expected that in the days immediately after PS surgery, some vomiting continues. The swelling and bruising inevitable with surgery usually take a few days to subside enough for the finely tuned gastric apparatus to resume its normal functioning.
The first years
But it’s also quite often that a milder form the vomiting or various degrees of reflux continues for months or even years. In this, there seems to be little difference between PS babies treated surgically or medically. Babies treated medically often need years or a lifetime of patient (but not critical) care, and sometimes decide on surgery after all. After infant surgery, it may be hard to establish if the vomiting is due to the original PS, the operation, or the baby’s constitution or diet. When the baby’s life has just been saved, who wants more tests unless they are absolutely necessary?
Many parents report any of a considerable list of frustrating behaviour, failure to thrive or gain weight normally, irritable bowels, and pain being the most common complaints. Sometimes these mask other perhaps unrelated but chronic and certainly nasty problems such as Crohn’s disease or ulcerative colitis.
Informed parents know that the early years of childhood can be trying, but one only has to read some of the many parent reports on the web to sense how frustrated parents can be when their pediatrician has brushed off any further complaints, dismissed the possibility of ongoing health problems after PS surgery, and bulldozed the anxious parents with stories of PS babies who grew up to be tall, handsome, thriving and sporty people.
1 Read the available information on the web and compare notes with other parents on web-based forums. Be as well-informed as possible but evaluate what you read: every baby and every child’s constitution is different; does or could this parent’s report really apply to my child?
2 Consult with a reputable pediatrician and be (a) reasonable with the doctor and realistic about your child’s problem, (b) insistent on your case being treated with respect and due diligence, (c) prepared to get a second opinion or see another specialist.
3 Don’t go alone if you think you may need support to present your case calmly and firmly.
If you and your closest confidant feel secure about your doctor’s explanation or recommendation, trust them and follow their advice, even if it means waiting patiently for further developments. Many PS parents have seen their baby rescued from near death by dehydration and starvation, and in the process their faith in the medical world has sometimes taken a beating. However, we must trust and hope (sometimes against the odds and always with discernment) that the medical world doesn’t allow many infants to die in our times and while in their care.
Especially those people who, like me, had infant surgery long ago are quite likely to have continuing problems throughout their lives. Such problems are perhaps hard to link scientifically (read: beyond reasonable doubt) with PS or its surgery. But we read such stories so frequently now and they have so much in common that those involved find the silence of the medical literature deafening.
1 Physical problems in later life in the area of the surgery scar (such as bloating, irritable bowels, other discomfort, or pain) are usually caused by adhesions which result from the operation. Sometimes they are caused by the discomfort from other abdominal problems in later life, possibly masked by the scarring or adhesions of their PS surgery.
Search the web or read my four posts on Scars that Strangle for more details on what adhesions are and their effect and treatment.
Because finding the cause of abdominal problems can be so complex and trying, and because many doctors believe the textbook mantra that PS surgery is always successful and without long-term effects, those who have problems often find it almost impossible to get a hearing, let alone help in finding their actual cause.
As I wrote recently, the only medical interest in the long-term effects of PS that I have found has been a small number of articles about the effects of PS on growth, mental development, or stomach function. Despite finding some significant (though far from universal) effects, these reports dismissed their findings as “insignificant”.
Conclusion: it may be difficult to get help for a problem which to the adult patient seems it may be connected with their infant PS or its surgery. From what I have read, if you cannot live with the issue and when it’s hard to get help from your GP, the best course is to ask to be referred to a suitable specialist in gastroenterology. And insist if you need to.
2 Emotional problems in later life after PS and its surgery seem to be fairly rare, and will probably disappear in time as better, more developed techniques of hospital care, anesthesia and surgery have now been fairly standard for several decades.
However, I suspect that non-physical consequences are more common than is generally recognised.
It seems to me that PTSD (post traumatic stress disorder) in any of its many forms is at the top of this list.
But who of us hasn’t had some traumatic experience that has continued effects on our body or mind? Many of us are able to live fairly well despite memories, obsessions, physical quirks, occasional outbursts, times of sadness, etc. And most of us can live a fairly normal life as seen by others, whilst we often deeply troubled by what’s happening on the inside.
I know this from personal experience, I have close links with others of whom this is true, I have networked with yet others of whom this seems to be true although acknowledging it is just too painful for them, and I sometimes wonder how many “difficult” people I’ve known in fact have an underlying PTSD.
This is the subject for another post.
When I read that infant surgery and pyloric stenosis as many including me have experienced them in the mid-20th century is “nothing” and “here today, forgotten tomorrow” – I wish that it could be so easily dismissed. Despite my gratitude for a long, happy and productive life.