Scar revision after infant surgery

A young adult recently posted this question to a web forum:

I am 24/F and I was wondering if anyone has had reconstructive or cosmetic surgery to repair the scar from having pyloric stenosis as a baby?

And this is the reply she got from the forum doctor:

arrogant doc4No, and I referred many infants to pediatric surgeons for this.  I must confess that even 24 years ago the incision to repair this was quite small, and the scar hardly noticeable.  You must be a very rare exception to have a scar so prominent that you want it revised.

Having had the same surgery as a baby and read the online blogs and comments of hundreds of others who have also grown up with a prominent scar they didn’t like, I certainly had no difficulty identifying with the questioner and what must have prompted her inquiry.

I was (frankly) rather unhappy with this off-handed and cold response.  I have encountered its like before, and tried in vain several times to post a Comment of my own to exchanges on the Forum site where I read the above.  Some medical pros can be “Great Gatekeepers”!

What is it about pyloric stenosis (PS) surgery that makes some of its “survivors” want to ask about corrective or cosmetic surgery?

And why is it that some medical workers are so dismissive about somebody asking an honest and clearly heartfelt question?

Cosmetic surgery for what?

Some who have had infant surgery are badly done by despite the fact that they and their parents were saved from a tragic and traumatic death.

110908 sick bub1I won’t detail here that so many parents still in these “advanced” times complain about being fobbed off by their doctor as being incompetent nursing mothers or fussing parents – only to be told a few days or weeks later that their baby was saved by surgery only just in time, at the very door of death.

Nor will I explore now the complaint by a very few parents that their surgeon was not careful enough, or that some surgeons tell their patients their job is to save life, not to do cosmetic surgery.

The fact is that judging by recent blogs, website comments and photos, even today (let alone 25 years ago), some infant surgery for at least PS (and no doubt for other conditions as well) was not skilfully done.

We must also remember that like a newborn baby, every scar takes on a life of its own: it may be affected by infections, suture and skin ruptures, and hernias that sometimes develop immediately.  Some scars develop in unsightly ways because of poor or unfortunate wound repair, adhesions under the wound, and later weight gain (for which we must take at least some responsibility).  All this is not the surgeon’s doing.

Let me just convey the reflective feelings of at least some of the many little infant surgery patients.

We grew up literally marked for life by something of which we have no memory, about which we could not be consulted, which deeply affected our developing self-image, and which was all too often never adequately explained to us.  At least some of us were sub-consciously affected for life by trauma: by too many days or weeks of starvation that had a lasting effect on our development, by infant surgery that by current standards was crude, quite possibly performed without good anesthesia, and involved long separation from our parents (including nursing).  During childhood and adolescence especially, some of us are (or were) very sensitive and self-conscious about our bodies, and many parents (like mine) had no idea about how to manage this as well as they could; some parents added to rather than reduced the damage done to their children.

Personal example and confession

150414-085It may surprise some readers that although my PS scar is about as tidy as it could be considering 1945 techniques, I spent years trying to modify and improve its appearance.  I realize even more today than I did at the time that my efforts were also in part self-discovery, a coming to “own” my surgery, and to a degree some frustrated or angry self-harming.

Some PS survivors who have had other surgery later in life have commented online that the scarring from the later surgery does not bother them but the scar from their infant surgery does. I identify with this and find it telling. First, as explained above I was not an aware participant in my infant surgery. Second, because my scar is front and centre (not, say, on my back or feet) and I am a sensitive soul, it got caught up with my self-image and self-confidence.

I’d like to think that my parents could have helped me to unravel these issues as others have, but seeing one or two of my family struggle with their own sensitivities, I also grant the job may have been too much for my folks even if they had tried!  So it took me years to work through this area alone. The advent of the web has been a huge breakthrough – swapping stories and images has broken down the feeling of “being different”.

Several of my co-PS-survivor correspondence friends have felt the need and had the funds to have corrective surgery.  I wonder if they were aware of similar undercurrents, or have identified them since?  And I wonder how many doctors have never come across such people as their patients?

So why dismiss a patient’s heartfelt question about cosmetic surgery?

Having interacted with people all my working life, I am quite aware that I don’t always “read” people with as much awareness, sensitivity and wisdom as I should.  Whenever I am aware that this has happened, I go through yet another personal or wider review process.  I want to learn.  We all do.

Might these comments I have gleaned from the web explain the thinking of the well-meaning doctor I quoted earlier?

  1. Professional ignorance 1“My work is to save lives, not to cater to patients’ narcissism.”
  2. “I am a general (or pediatric) surgeon, not a plastic or cosmetic surgeon.”
  3. “People should “get a life”, “move on” and be grateful for the scar that is part of their survival.”
  4. “PS surgery is really minor compared with many other conditions which need infant surgery.  The same is true of the scar, even if it’s not pretty.”

Having written this blog, let me add that it seems that many people who have had PS or other infant surgery are able to ignore or forget they have had it.  They tell us they have not been affected by the trauma that can and does accompany early surgery for some of us.  They would also have a more confident and extroverted nature and/or have profited from excellent parenting that has helped them to understand, accept, embrace and even feel pride about their story and its “lifeline”.

My word to people who would like to know whether scar revision is a good idea for them?

  • Damage from surgery cannot be totally eliminated, and in many cases these scars are hard to improve upon.
  • In cases where weight reduction is a factor, many abdominal scars can be removed together with other excess tissue, and the scar from this surgery can indeed look better than the present appearance. It can often be well hidden at the lower part of the abdomen.
  • When the scar from the incision has widened due to poor healing or when it is has become sunken, it can often be improved by good cosmetic surgery.
  • Keloid scarring is usually better left alone.
  • Before you consult a doctor, do your homework: read, discuss, interact and perhaps message others who have had scar reduction done.  Facebook and websites like MedHelp and Topix have many comments of good value.  Contact me if you cannot find these.
  • If your doctor or specialist dismisses your request or inquiry without giving satisfying answers to your informed questions, consider getting a second opinion, or just look for a better doctor.

If you have questions, stories or comments on this subject, please post and discuss them here or at one of the other addresses I have mentioned.  This is not an issue for everyone, but it is for some and it’s worth airing.

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10 thoughts on “Scar revision after infant surgery

  1. Helen,

    Thank you so much for this. I had PS surgery in 1985 as a severely premature baby. The scar from this (just below my ribs, and adhered to the muscle behind) is really indented, and I dream of one day having a smoother, more symmetrical abdomen. This is a great article, thank you – it’s lovely to know I’m not the only one who feels like this about my scar. I’m going to be looking in to scar revision in the coming months. I’ve had opposition from my parents in the past, especially my mum, who says my scar is ‘part of me’. I agree, and it will always be there, but I just want to to be smoother and less indented.
    Interestingly, my parents also experienced the disbelief of doctors that there was even a problem. I had to be fed in the doctor;s surgery until I projectile vomited all over his office. I had surgery within 24 hours. As a girl (less usual I understand) and with three older brothers (none with any signs of PS), the doctors had previously refused to believe there was any problem.

    Reply
    1. Fred Vanderbom Post author

      Your story is all-too-typical, Helen. Parents can give too much weight to their own ideas when it comes to a very personal issue their child has. I experienced that with my parents, as you may have read in “My Story”. I had to make my scar my own, and this seems to be a common need. I trust your mum will support you in a decision about correction which quite some other PS’ers have also made.
      Many doctors seem to have just a simplistic, classroom/textbook-type understanding of PS, but who can blame them? They may meet only a few PS cases in a lifetime of clinical work, along with lots of babies and parents worried by a list of greater and lesser problems.
      Consider also that PS shows up in lots of different guises: it develops quickly or slowly, very early to very late in the normal range of up to age 4 months, it may show up on scans easily or not until late, and it usually affects boys – but also girls as the numerous stories on the web show.
      Thanks for your Comments. It is so encouraging to know our personal problems are not unique and in fact quite within the bounds of normal! I run this site to share what others and I have learnt and to network so that those of us (survivors and parents) who have a past and perhaps present struggle after infant surgery can learn they aren’t alone in this.

      Reply
  2. Sandy

    Thanks for sharing this! My mother is asking me about scar revision and I don’t know how to answer. This post may help her. Thanks again.

    Reply
    1. Fred Vanderbom Post author

      I’m always encouraged when a reader finds a post helpful to their situation, Sandy. I hope your mother too finds it helpful to read these comments. Life has taught me that most people without a scar embarrassment (or other “shame”) issue find it hard to understand and take seriously those with such a problem. And having a scar is not a problem for many, but as for those who are sensitive to this… Best wishes!

      Reply
  3. Helen

    Good morning all – Further to my post above – I had my scar revision surgery in Jan 2015, and it is healing well. Simply releasing the original scar tissue from the muscle, cutting it out, and re-stitching has made the world of difference. The scar is perhaps a little longer now than it was before, but that’s because the skin isn’t puckered around it. Four months on, it’s smooth, still a bit red but fading, and I’m confident that in a year or so it will have settled down entirely. My surgeon recommends regular massage on it to prevent collagen building up, and silicone-based scar reduction products.
    I’m really looking forward to not getting sweaty patches on my t-shirts this summer – it’ll be a revelation!
    Hope my story helps some other people make the decision on whether to go ahead with revising their PS scars.
    (Note: Surgery, done privately rather than on the UK NHS, cost about £1,700)

    Reply
    1. Fred Vanderbom Post author

      Thank you Helen for this update. It answers the main questions people like us have on our minds about scar revision, and it’s a “good news story”! Best wishes for a full recovery and being able to enjoy the benefits for the future!

      Reply
    2. Jenny

      Thx Helen. How should we search for a doctor who could help our 13 year old in NYC? Did your doctor have experience with PS? Ideally, we’d like someone who has been successful with this procedure. Any advice on how to find a surgeon would be great. She is self conscious and it sounds like doing this surgery sooner (rather than 18 years old +) might reduce the scar today, and ‘release’ it from becoming more pronounced as she continues to grow. Any thoughts / advice much appreciated. Best.

      Reply
      1. Fred Vanderbom Post author

        I very much hope your get some helpful responses to your request, Jenny, but as Helen is not currently a subscriber here I hope she is following this thread. In any case, may I suggest you cast your message more widely than here if you haven’t already done so. I suggest two sites especially…
        The RealSelf website links people offering, seeking and having had plastic surgery in the USA, mainly for or after weight reduction surgery but also for scar reduction. I get their daily newsletter and have come across several people who wanted or had PS scars improved.
        Facebook subscribers have several Groups for people who have issues due to PS (both as parents and survivors). Several of these Groups are “closed” (Pyloric Stenosis Support Group and Awareness of Pyloric Stenosis): every Facebooker can find them, but to access (see and read) one you have to join that Group. Other PS Groups are fully public but not as large: take your pick.
        The readers here would value an update on your progress!
        Best wishes!

  4. Diane Capon

    I had pyloric stenosis when I was born, a most horrible looking scar and it was weeping. It was so indented I pulled all the muscles around it. I couldn’t move for 3 days. Saw a plastic surgeon and underwent surgery when I was 19: a nice little neat scar but visible still. (edited slightly)

    Reply
    1. Fred Vanderbom Post author

      Thanks for posting something of your PS story, Diane. You are one of the few PSers who have had a scar revision. Many don’t feel the need, others would give a small fortune if theirs could be improved, but found it cannot – and you are fortunate to feel good about your revision!
      Successful revision depends on the scar’s structure and the skill of the surgeon. Some scars are too extensive or the underlying damage is too great for a successful surgery. Often, only a careful examination will tell a surgeon whether he can do the work, but you’ve passed all the hurdles well, it seems!
      Best wishes.

      Reply

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