Here today, not always gone tomorrow

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.

Parents who have a baby or growing child with continuing worries after surgery like that for PS need to do several things –

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.

Adult life

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.

13 thoughts on “Here today, not always gone tomorrow

  1. Mark

    The long term physical effects from my surgery are pretty minor, i get a little sore sometimes, a little itchy other times, and the like. Maybe annoying, but not disruptive to living a full life. Emotionally I have also adjusted over time. I really think that better parenting would have allowed me to avoid decades of serious discomfort and stress. If you are a parent reading this, please do not discount the importance of your role in your child’s recovery. As a youth, it would have meant the world to me to feel I was not alone, that at least one other person was unconditionally by my side. It doesn’t matter that you cannot relate or understand the issue they are feeling, just remember that to them, it is very VERY real. Look together for creative alternatives to personal challenges, and let them be involved in the final decisions. Learn to patiently lead, but not bully or push them out of their “safe” zone. Advocate for them as often they cannot speak for themselves, but respect their need for confidentially. Time and solid support are the two best prescriptions in my mind.

  2. Fred Vanderbom Post author

    Excellent, heartfelt and very important advice born from experience, Mark, thank you! I don’t blame my parents for what I missed out on, as they were people of a much, much less informed age, and also had their own internal pain and quirks.
    Today’s parents (and partners for that matter) can do a lot to avoid or ease the struggles some of us have had after infant surgery.

  3. Katy

    My son just had the surgery to correct pyloric stenosis. He was only 19 days old when he went under the knife. My husband and I were both there for the entire 5 days he stayed in the hospital, taking pictures and spending all our time with him. We never left the hospital until we were discharged. I also started charting everything from the first day he started projectile vomiting to now, I’m still writing down when he eats, how much/how long, when he gets his meds, number of diapers he makes, etc. That is for the doctors as well as him when he’s older, so if his children have it and my husband and I are not around, he will know what to look for. He hasn’t had any problems since the surgery other than an infection in the hospital: because his umbilical cord stub had just fallen off 3 days before we were sent to the hospital, his belly button was still oozing, trying to heal. I know he won’t remember the surgery or his parents there for him; I want him to know we will always be there for him no matter what, hence the pictures and the notebooking.

    1. Fred Vanderbom Post author

      Thank you, Katy, you and your husband have done so well! This is exactly the kind of thing I would have longed for, although I understand and appreciate that my parents and hospital knew no better. Today most infant surgery is much advanced on what happened just one and certainly two generations ago, and many parents are much more aware of the considerations you clearly reflect. It’s very unlikely that your son will suffer trauma after the protection and love you have poured into his subconscious mind, and he’ll be grateful for your forethought and help as he discovers this very early chapter of his story. Best wishes!

    2. Mark

      WOW Katy! You guys sure have your parenting priorities set up right. I will lay you money that your son grows up totally unconcerned about his early medical issues, largely due to the type of parents he has. So very glad he is doing better and hoping you are feeling like the whole event is over.

      I am curious how you and your husband felt about the amount of information the medical team gave you, and if you felt like you were part of the decision making process, or just there, watching it all happen around you. Did they offer any choices to you or just tell you how it was going to happen? Did they encourage you to stay at the hospital? Do you have any advice for other parents about to go through this with a newborn?

  4. rollospinbot

    I stumbled upon this blog while looking up information about vitamin malabsorption. I underwent corrective surgery for PS when I was an infant, in the mid 1970s. There were serious complications before the surgery, and after it an infection from hospitalization, and there was a period of starvation prior to the surgery because the doctors didn’t “believe” my mother that “something was wrong.” I was initially marked as a failure to thrive situation, when indeed there was a serious medical condition.
    Until reading some of the articles here, I never for a moment considered any of my current medical issues to be related to PS. While I haven’t had any verifiable gastrointestinal issues, I have had problems all my life that were chalked up to fibromyalgia or purely imagined, since my tests always came out clear. What I am noticing though, and do wonder if there’s a correlation, is vitamin malabsorption and PS. Currently, despite taking 2k units of Vit D a day, recently upgraded to 4, I have chronically low levels of Vit D. I also have trouble absorbing Vit B, though am not considered deficient, and I suspect calcium. I will continue researching this, but will be coming back to this blog for information. Thank you so much for this. After all this time I may have found a connection. Thanks! ~ Jessie

    1. mark

      Hi Jesse. I have done some casual research into after-effects of PS, nowhere near the extent of Fred the author of this blog, but I do not recall any reports of vitamin malabsorption and PS or PTSD. I do recall reading about people having fibromyalgia-like symptoms as a result of PTSD. I encourage you to continue thinking it through and invite you to pick our brains with whatever questions you might have. Hopefully we will all expand our knowledge and understanding through our contact. Again, nice to meet you!

    2. Fred Vanderbom Post author

      As I’ve written elsewhere, please don’t take this is personal and professional advice, Jessie…
      Like Mark, I have never come across a report of a direct link between PS or its surgery and malabsorption.
      Yet consider the following:
      1) About 8% of PS babies have one or more additional development-related problems, ranging from Downs Syndrome to heart and gastric malformations and disorders (like Crohn’s and cystic fibrosis). Many more than this 8% have common gastric problems like GERD and IBS, over- and under-weight. It’s quite possible that alongside your PS you did in fact have a condition causing malabsorption of nourishment (showing initially as a “failure to thrive”).
      2) I googled “malabsorption” and “pyloric stenosis” and one of the first sites listed named 50 gastric conditions, several of which could cause what you’re struggling with now. We’re given to understand that there are actually more than 50! I recognised several conditions on this list as ones that sometimes come with PS.
      3) As I say in several of my posts there are many medical research reports dealing with PS, but little works seems to have been done on the causes and effects of PS and its surgery. Why? It’s a very complex field, most of us PS babies responded spectacularly to the scalpel, very few (as you have found) link later problems with the starvation and surgery that come with PS, and most candidates for medical research dollars shout much more loudly.
      4) In one of my posts I have noted some of the reports that link PS with gastric behaviour, but I cannot understand why these reports tend to dismiss their significant findings on such links as “insignificant”. I’d say they’re not insignificant to the smallish percentage of patients they affect!
      5) I’m sure your research will include finding how Vitamins B and D are absorbed into and used in the body. If this includes the area near the pylorus (which I’d somehow doubt) this could be very significant.
      I wish you well on what has been a long and frustrating condition and search already. Please keep this site informed and be invited to join in our discussing the subjects that interest you. I also administer a small PS Group on Facebook and there are others: it may be well worthwhile asking some of your questions there?

  5. Anthony&Jessica

    Thank you for the info, Fred and Mark. I know my research is and will be an ongoing process, but the info provided will give me some other things to think about. As far as I know, my doctors ruled out Crohn’s disease and cystic fibrosis – but have no reasons for the malabsorption issues. Thanks again for the very thoughtful and helpful replies. ~Jessie

  6. L wells

    My daughter had PS surgery at 3 weeks old and since then has been fine, however she has consistently been below the 10th percentile in terms of weight gain. She is now 8 months and had no increase in weight from the previous month. (7.6kg) I am beginning to suspect FTT but why would this be? She has a good appetite and is on solids and breastfed. Her two older brothers were a ‘healthy’ weight and since I am doing the same as before I don’t understand the lack of weight gain other than to imagine it might have to do with the PS. Any ideas?

  7. Fred Vanderbom Post author

    Not being a pediatrician means there’s a lot I don’t know!
    My own experience and reading suggest at least these possibilities: 1) weight gain is often irregular; 2) some children are in the lowest part of the weight-for-age range; 3) if your daughter is eating well and soiling her nappies/ diapers she won’t be dehydrated or wasting away; From my reading, if the pyloromyotomy was incomplete or the PS has returned, your little one would be vomiting and losing condition.
    “Failure to thrive” is a catch-all label, usually meaning, “Hard to say what’s going on without tests but it’s safe to wait and see”, and I would allow this lack of weight gain longer than a month. Be vigilant for any signs of serious trouble (e.g., loss of condition) and then I’d want to trust my doctor, as thankfully not many little ones are left to die of FFT. (Though too many come close when PS is involved.)
    It may be however that your little lass will need extra TLC and continued diligent encouragement to eat and drink, as did two of my sisters for aroiund 10 years. I’m grateful they then started to thrive and are now both healthy women.
    Best wishes and feel free to respond or update this!

  8. L wells

    Many thanks for the reply to my concerns. It has certainly helped to feel better about it. I will be going to see her doctor next week and will see what she has to say. Although I am keen to suggests some blood tests or nothing too invasive just to be sure we haven’t missed anything. The experience of the PS has made me more aware of how things can go undetected and sometimes only gut feeling is a better indicator. Thank you again

  9. Pingback: Learning about infant surgery’s long-term effects « Stories from the Survivors of early Surgery

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