John’s life-changing infant surgery

As I observed in my previous post, reviewing 2012, one of the heartening things has been the growing number of people connecting with this site to tell their infant surgery and PTSD stories, to network, and some to interact as trusting friends – as those with a shared experience or passion will often do.

This post moved me deeply and conveys the message of this blogsite so well.  I am sure it will bring home to many of our readers that infant surgery was usually and can still be traumatic, both at the time and in its after-effects.  Whilst I am thankful that anesthesia and pain management are now much safer and more advanced, John’s story certainly underlines many things for me.

This week’s post belongs to John, who writes…

Thank you for your blog.

I had infant surgery for a congenital cataract at age 8 months in 1975.  I now know from your blog and from other research that the surgery was conducted without anesthesia.  In the recovery room, my eye was bandaged and my arms were taped to boards so that I could not bend them to tear at the bandages.  I was sent home in this condition and remained bound, I believe without pain medication, for one and a half to two weeks.

I am wearing blue, am about six months old and have not had any surgery.  I appear to be a normal healthy baby who is happy.

I am wearing blue, am about six months old and have not had any surgery. I appear to be a normal healthy baby who is happy.

Here I am wearing white, I am about a year old and have had my first surgery (at about 8 mos.).  You can clearly see how severely I was affected.  I appear to be younger in the second picture than I am in the first.  I am holding my head and my body, in particular my left arm and leg, in a very un-natural way, and I am squinting with my left eye--the eye which was operated upon.  In looking at the picture, I feel like I must still be trying to get away from the pain.

Here I am wearing white, I am about a year old and have had my first surgery (at about 8 mos.). You can clearly see how severely I was affected. I appear to be younger in the second picture than I am in the first. I am holding my head and my body, in particular my left arm and leg, in a very un-natural way, and I am squinting with my left eye–the eye which was operated upon. In looking at the picture, I feel like I must still be trying to get away from the pain.

According to the medical literature, infant cataract surgery remained a “controversial procedure” with no standard technique or outcome (or even measurement of outcome) until the early 80’s.  My surgery was one of thousands performed between about 1960 and about 1980 when a viable procedure was finally developed.  Prior to 1980, all infant cataract surgeries were, to say the least, experimental.

My outcome was poor.  I never gained vision in my left eye and suffered three more surgeries by the age of ten – one, another experiment to remove scar tissue that had grown into the space they had tried to open in the first surgery; the other two for acute angle glaucoma, a very painful and (although not known at the time) common side effect of infant cataract surgery.

As part of the experimental protocol, I was subjected to aggressive vision therapy during my toddlerhood.  This “therapy” (again with no known outcome) consisted of my wearing a contact lens in the blind eye and for several hours a day wearing a patch over my “good” eye.  The patch effectively rendered me blind while I wore it.

At age 26 I ultimately lost my left eye due to the earlier surgical trauma and now wear an ocular prosthesis.  Last year I received a diagnosis of PTSD and have been seeing a very experienced trauma therapist for 20 months.  My prognosis for a full recovery is very good; however, things are fairly hard right now.

My PTSD cost me my job and my marriage.  I am employed again (as a web developer with a flexible schedule) and rebuilding.

I suppose I am writing just as a way to reach out to the nascent community of survivors of this special brand of torture.  I am not certain that many of us have survived into adulthood, or survived the PTSD if we did.  Others may not know the truth of what happened to them.  I think that many things are coming together now to help us all connect: the Internet, changing attitudes that allow old things to come to light, and the tendency of PTSD to manifest very strongly in one’s thirties–the age bracket of those of us in the “last wave” of infant surgery without anesthesia.

It is good to know that I am not alone.  The last six weeks have been especially hard.  Your blog has made it a bit easier.

Peace,

John

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2 thoughts on “John’s life-changing infant surgery

  1. Wendy

    I am so glad, John, that you are still alive–that you survived life-threatening surgeries and PTSD. I am also glad that you found a therapist with whom to work so that you can “rebuild.” You must be so mad about how you were treated. I was operated on at 26 days old, likely without anesthesia, and when I read that you were “taped to a board,” the hairs on my arms and legs stood up straight. I’m sure I was secured to the table as well. Just this morning in meditation, I was working with a general body feeling of being dead or numb. A little later, I heard these words: I am alive. I know it sounds a little nuts, but I am still working to befriend my body after rejecting it due to the enormous stress and pain. My anger spilled out when I was a teen (joined a gang) and when I was in my early 20s (tried to kill myself). You are a very courageous person to be facing what you suffered. You give me courage, too. I feel less alone reading of your struggles, though I am sorry you for your pain. Thank you, too for sharing the photos. Very meaningful. And thank you for sharing this earth-time with Fred and me and for sharing your story with us all. Many thanks also to this blog that gives so much to so many.

    Reply
  2. Fred Vanderbom Post author

    Your affirmative and matching comments are very much appreciated, Wendy. It’s been a great privilege and very important, I believe, to post something of the heart of John’s story here. So much of it agrees with what you, I and others have experienced – and all of us can now read some of these formerly closed pages at long last.
    Some of our stories are (almost) unbelievably bizarre and cruel. Is it any wonder that many of us have found the road to recovery from our PTSD frustratingly complex and our progress mixed? And no wonder many parents have resorted to denial when their tortured child started to ask pointed questions.
    For me too, John, your photos add both punch and poignancy to what you have written. All our readers owe you much gratitude, and we trust and pray that your writing here will help in your healing and that you will find increasing peace as regards the hurt and disruption of your life.

    Reply

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