Sabrinas Story

This little angel was my daughter Sabrina. She never got to see her first birthday. She died 31 hours before she
reached the age of one. She was one of the sweetest babies. Always quick with a smile and raised arms to be
picked up by anyone that entered our home despite what she had to suffer through. I am writing this to educate
people that the medical industry (Practice?) did the most horrendous thing you could possibly imagine to her and
other babies two years and under. They performed surgery on infants without the benefit of anesthesia. I
was not aware that she endured the horror of being awake and unable to move as she was not given anesthesia or
pain medications just a paralytic as they were cutting into her with a scalpel. It is not something that is
commonly known. I just found out recently by accident.

I read over 8 studies on Pubmed, and Medline that show that this practice of performing surgery on infants and
small children without anesthesia that happened up to at least 30 years ago leave the Now adults to have
suffered beyond measure, anxiety, panic attacks, fear, inordinate stress, depression, suicidal feelings, chronic
disabling symptoms and symptoms of PTSD. But they make not seek help as they do not know why they feel
so horrible all the time. Many have taken their own lives.

I am writing this to try to reach out and help if I can. Please dont let my daughter to have died for nothing.
If I can convince or help at least one person to seek help to make their life better or even to survive, and then I
have achieved that goal. At the end of this article there are lists of links that will hopefully help someone,
somewhere.

This one is very informative

https://ltinnin.wordpress.com/2010/12/30/infant-surgery-without-anesthesia/
This is Sabrinas story
Sabrina story was originally published in the Akron Beacon Journal in Aug 1986. There were quite few stories
as she was the first child in OHIO under the age of two to receive a liver transplant at the Childrens Hospital of
Pittsburgh. The stories followed her right up until the end.

Thirty years ago, this adorable child endured 3 surgeries in Akron Ohio in which her biliary duct attached to the
liver was irritated and swollen shut, had to be removed and replaced with part of her intestine. It did damage to
her liver that was irreversible. This was a rare operation called the Kasai procedure and the surgeons at
Childrens hospital (I found out later) had very little experience with this type of very intrusive surgery at that
time. Mistakes were made and things went downhill from there. I was not aware that she endured the horror of
being awake and unable to move as she was not given anesthesia or pain medications as they were cutting into
her. This is very hard for me to write as I tend to get very emotional about this but some things have to be said so
that my warning and point can be made. After each surgery I could see the toll it was taking on her little body. I
look at the photos and could see how she was wasting away month after month. I could see each surgery taking
more of her than the last, until she was just too weak to survive. Up until 1987 this was the Standard surgical
procedure and practice. Babies were given curare to induce temporary paralysis and a little nitrous oxide if they
showed severe signs of stress. But pain control was for the most part ignored.

How is this possible?

Doctors took the official view and truly believed that babies under the age of two dont really feel pain. The
belief was probably based a dubious study conducted in the 1940s, and evidence that many infant brain cells are
unmyelinated meaning that the neurons lack a protective sheathing that makes the transmission of nerve
impulses more efficient. Presumably, surgeons reassured themselves with the idea that the pain signal would get
lost on its way to the brain.

How in the world could someone, anyone believe that a baby does not feel pain. It is just common sense.
Babies are obviously born with very low threshold for pain as it is their only means of communication to their
mother. If they are hungry, thirsty, tired or have stomach pain, they cry. The more pain they are in the louder
they cry. But when subjected to surgery without the benefit of anesthesia their little bodies go into a form of
shock as this excruciating pain is something way beyond what they can understand or deal with. After any one of
her surgeries Sabrina would lay in her crib in the ICU and become stiff and rigid. She didnt cry or move. They
told me this was completely normal. How could they have all been this idiotic? She would look at desperately
trying to make me understand that something was so very wrong. I then realized that they were not giving her
any pain medication. She had just gone through major surgery so why?

I wish I had known what she had just gone through during her surgery. The only thing I was aware of was that
they refused to give her any pain medication after her surgery. When I had asked them to give her something
for the pain they told me that she did not need it and pointed out she was not crying.

She was clearly in severe distress and pain. I argued until I made a huge nuisance of myself. I could see that she
was in pain and she could not tell me. I asked again and again until they finally had a doctor talk to me and
explain why and how babies did not feel pain. I did not believe them, but I felt helpless as there seemed to be
nothing I could do and no one I could convince. So I finally stopped asking since I could not force them to give
the medication to her. I just did what I could to make her comfortable. I lost that fight. I had 2 other children to
care for and living on no sleep trying to divide my time between the hospital and home with no help. I became
weak. They wore me down to nothing I guess.

At first when I would try to hold her or touch her after any her surgeries she would violently flinch and pull away
from me. I just wanted so badly to comfort her. I found that stroking her head gently for a while would put her
to sleep and then I would breathe a sigh of relief when her breathing became easy and relaxed. I thought at least
she is not in pain at that moment.
She had 5 surgeries total in her little short life until her little body just gave up. I could see it in her eyes before
she died (that look that I did not understand until now.) I now think she thought that I was doing all this to
her. Since it was my job to protect her I believe at the end she somehow realized that I was not stopping it from
happening to her. Look at it from her point of view. She could see her mother hovering over her time after time
and looking concerned but not doing anything to stop the bad people from hurting her. At her age she was
unable to tell me what was wrong. It is a mothers job to defend and protect their child. A babys mother is their
entire world at this age. They have to depend on their mother for everything they need.

At the end she would turn her head away from me. She never lifted her arms for me to pick her up again. She
never uttered the words Ma Ma again. I DID NOT DO MY JOB!!!. I literally allowed my precious child to be
tortured to death. I have to live with the fact that my child most likely thought that I was that bad person that
was hurting her even though I did not realize it at the time. It is really hard for me to live with that knowledge. It
is so hard to believe this really happened.

One of the last things I said to the medical staff when they told me she was not going to make it through the night
was to ask them Please give her something for the pain, I dont want her to die in pain. They started up again
about how babies dont feel pain. I lost it for just a few minutes and screamed at them over and over to GIVE
HER SOMEHTING FOR THE PAIN. They finally did

The whole story is that they were wrong, very wrong and many babies suffered from their huge mistake. Are
they sorry? I dont think so. In the last few months I had to do a quite a great deal of research on this medical
nightmare as I needed to find out how it was possible to keep this in the dark for so long. I found only 10
legitimate instances that mention it on certain websites after searching for over a month. A lot of it references
circumcision and the deep within those articles is where they reference BABIES DONT FEEL PAIN.
Unfortunately a lot of doctors are still cutting into live tissue with circumcising baby boys even today without
pain medication.

MEDLINE/PubMed Resources Guide

https://www.nlm.nih.gov/bsd/pmresources.html

There was no internet back in 1986 and all the hospital staff was warned never to tell the parents that their babies
did not get Anesthesia so it is no wonder it remained a secret for as long as it did. I read an article that this horror
show actually did show up in the newspaper in 1987 for 1 day and the medical industry was finally outed. An
outraged mother discovered her baby went through major surgery without anesthesia. In the United States, a
major change in practice was brought about by events surrounding one operation. Infant Jeffrey Lawson
underwent open heart surgery in the mid eighties. His mother, Jill R. Lawson, subsequently discovered that he
had been operated on without any anesthesia; she started a vigorous awareness campaign which created such a
public, and medical, reaction that by 1987 medical opinion had come full circle. This caused a landslide of
enraged parents to hire lawyers and cause such a commotion that they were forced to change the way they did
things. Unfortunately it was just too late for Sabrina.

They actually performed clinical trials that were published from 1983 to 1987. I read a group of published
studies with slightly different criteria but with the majority showing very similar results. An example of one
study show that out of 20 babies, half received anesthesia and half did not. Approximately 60 percent of the
babies died either during or soon after major surgery without anesthesia. The ones that did receive anesthesia
only 20 percent died and 80 percent survived. These studies are on Pubmed and Medline. I hate the fact that
they were treated as guinea pigs but it did prove that anesthesia was necessary. The fact that many babies died
because of the lack of pain control and not from their illness or disease will torture me until the day I die.

I find it odd that here are thousands of websites showing the dangers of anesthesia for infants and thousands of
sites that contradict that information and show how anesthesia is very safe for infants. And there are just a
handful of websites that tell about this horrible act of the torture babies had to endure.How were they able to
cover it up so well, confuse the public or scare them?
I was able to contact two doctors that practiced during the 80s and asked if they was aware of this particular
practice of no pain control for babies. One said Yes it happened but it is a moot point now as they dont
remember it anyway. I did not know how to respond to that as that now has been proven false also. The other
said Yes, we were aware of it but things have changed since then. Neither one seemed as if any of this was
horrendous practice was important or showed even the slightest bit of interest or empathy.

In 1987 a Dr. Kanwaljeet Anand stood up for the babies that could not speak for themselves

One of his studies on pain meds and babies

Lancet. 1987 Jan 31;1(8527):243-8.(study that he finalized on Pubmed)

https://www.ncbi.nlm.nih.gov/pubmed/20928962

(Summarized article I found)

(Fortunately, Dr. Kanwaljeet Anand didnt buy it, and he took action. First, he led a study that tested the effects
of surgery on the infant stress response. Sixteen premature babies requiring surgery were randomly assigned to
receive either the normal, no-painkiller approach or surgery with anesthesia. Not only did the no-painkiller
babies experience much higher stress hormone levels, they also suffered more post-operative complications.

In subsequent research, Anand and his colleagues demonstrated that babies who received surgical anesthesia and
postoperative painkillers were less likely to die. Anand worked to uncover evidence that babies begin to feel pain
long before birth. Today, he continues his ongoing investigations of the most humane ways to balance risks and
treat babies in pain.

So we owe a lot to Dr. Anand. He pioneered a new understanding of safe pain management in babies, and
sparked a quiet revolution in the treatment of infants who need surgery. When we face the terrible prospect of a
baby in trouble, there are advocates who understand that babies suffer pain and need relief. Thats because Anand
and his colleagues devoted themselves to discovering the truth and changing medical practice.

Im grateful and relieved to think that many babies today live in a safer and more humane world. But Im also
aware of how easily people once accepted the notion that young babies dont feel pain.

The argument about myelination is still being used to make unchallenged assumptions about what babies do and
dont feel. Many people cherish folk beliefs that babies cant remember anything and dont experience emotions.
Can we quash these beliefs? And never let this happen again? I Hope so)

The article below was very helpful in explaining and summarizing a lot of the information I needed to know. It
also lists 139 published studies that you can read on PubMed and Medline if you need to verify. The studies and
resources on these legitimate and government study websites have so much information you could probably
spend years digging through all of the articles about the surgical practices from the 1950s to 1987. I finally had
to stop and say enough is enough, I know what happened and now I know there was nothing I could have done. I
just have to try to live with it and hope that Sabrinas Story will find just the right people to help.

http://www.nocirc.org/symposia/second/chamberlain.html#n67

BABIES DON'T FEEL PAIN: A CENTURY OF DENIAL IN MEDICINE

David B. Chamberlain, Ph.D.

Website links that offer information pertinent to what happened to those babies are now adults who survived this
nightmare and hopefully will get some help.

http://www.doctorsonfetalpain.com/answering-the-pain-deniers/
http://www.ox.ac.uk/news/2015-04-21-babies-feel-pain-adults
http://time.com/3827167/this-is-a-babys-brain-on-pain/
https://myincision.wordpress.com/2011/02/05/doctor-starts-blog-about-infant-surgery-without-anesthesia/
https://elifesciences.org/articles/06356/figures
https://www.ncbi.nlm.nih.gov/pubmed/1530752
https://ltinnin.wordpress.com/2010/12/30/infant-surgery-without-anesthesia/
http://www.nocirc.org/symposia/second/chamberlain.html
http://www.cirp.org/library/pain/
https://blogs.babycenter.com/mom_stories/if-dogs-get-stressed-how-about-babies/

This is what I want people to know..

Paralyzed, Wide Awake, No Pain Control

Those major surgeries required that the infant have artificial respiration during the surgery. The baby was given a
curare drug for total paralysis while the respirator tube was inserted into the windpipe and the paralysis was
maintained throughout the surgery. The paralyzed baby was wide awake with no pain control. Imagine what it
must have been like for the infant: unable to lift a finger; unable to move away from the searing pain of the
scalpel; the sensation of being turned inside-out as the heart or intestines are grasped; and the overwhelming pain.
People that have survived these early traumatic experiences usually cannot recall them verbally while they cannot
forget them nonverbally.

Life-Long Symptoms

The symptom picture of the survivors is broader than the usual picture for posttraumatic stress disorder. Adult
survivors report life-long symptoms of anxiety (constant nervousness and spells of terror or panic), hostility
(temper outbursts and urges to smash or break things), depression, self-consciousness, distrust of others, and a
high vulnerability to stress. The life-long aspect of these symptoms leads to the faulty clinical perception that
they are personality disorders instead of recognizing them as persisting reactions first elicited by the brutal
surgery. That recognition opens the way to curative treatment of the adult survivor. . . .

Thats why we have to get the word outto end the needless suffering. If you know someone who had surgery as
an infant before 1987, a friend or relative or anyone that seems to suffer from some form of mental illness or
PTSD without knowing why here is a website that might be able to help.

https://ltinnin.wordpress.com/2010/12/30/infant-surgery-without-anesthesia/

Please contact a Mental Health professional to get help..