What do you think is worth fighting for?

“It has been said that something as small as the flutter of a butterfly’s wing can cause a typhoon halfway around the world.”- Chaos theory

Do infants feel pain?

Jeffry Lawson was born on February 9th 1985, a little too early and a little too small. He was born at 26 weeks and weighed a little more than 700gms, his chances at survival were slim. He needed a surgery called a PDA closure (an open heart surgery) to help him survive. He survived only 5 weeks after his surgery. He would have been my age if he had.

A few months later, his parents Jill and James Lawson found out that the surgery on their child had been done without anesthesia. He had only received a powerful paralytic drug, which would not prevent the pain, but make sure he did not move during the surgery.

“That is how it is usually done”, they were told.

“They (babies) don’t feel pain the way we do.”

“They won’t remember, even if there is a moment or two of discomfort.”

“Besides, they may not even tolerate analgesics.”

Jill Lawson tried to get support for her position that babies should get pain control from dozens of governmental and nongovernmental agencies in vain. They were not willing to help her or they supported the anesthetist’s actions.

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They could have left it there. It had not been the surgery which caused their baby’s death. They had little chances while fighting against the elite medical community.

The news reports said Jill Lawson was a housewife from Maryland.

They were not professionals, doctors or advocates.

Her complete account of the story can be read here.

An excerpt from one of her reports reads:

‘‘Jeffrey had holes cut on both sides of his neck, another cut in his right chest, an incision from his breastbone around to his backbone, his ribs pried apart, and an extra artery near his heart tied off. This was topped off with another hole cut in his left side. The operation lasted hours. Jeffrey was awake through it all. The anesthesiologist paralyzed him with Pavulon, a drug that left him unable to move, but totally conscious. When I questioned the anesthesiologist later she said Jeffrey was too sick to tolerate powerful anesthetics. Anyway, she said, it had never been demonstrated to her that premature babies feel pain.’’ 

It was not until a year later, in August 1986, that an article in the Washington Post told their story to the world. In the article, Rovner, a staff writer, interviewed several experts in the area. The article include a quote by Willis Mc Gill, Chair Anesthesia who said “it doesn’t do anygood to have a dead patient who doesn’t feel pain’’.

This article followed others which highlighted the inequity of conducting surgery on babies without anesthesia.

Those days few parents realized that major surgical procedures were routinely performed on premature and sick new born infants without analgesics, which relieve pain or remove sensation. Instead babies were immobilized using strong muscle relaxants. Many procedures in the nurseries were done without pain relief, day after day, and week after week.

Pain in infants was soon discussed around the breakfast table and the water cooler. If mothers knew by the cries of their babies that they had pain, why did not doctors agree with commonly understood parent observation?

In the meanwhile Dr Anand, a surgeon in the UK, was working on measuring stress responses using small blood samples in infants. He showed that neonates showed a major stress response following surgery which eased with anesthesia. He was awarded the Dr. Michael Blacow prize for his paper on “Anesthetic management of preterm infants during PDA ligation.”

With the publication of his paper in the Lancet in 1987, the world realized that surgeries were being performed in babies without anesthesia. Dr Anand and his supervisor Professor Aynsley Green were viciously attacked and accused of experimenting on babies and withholding analgesics. They demanded an investigation by the General Medical Council.

Dr Anand might have thought that his career had ended.

There was an immediate uproar in the press.

The experiments were severely criticized and condemned.

It took several prominent medical scientists to point out that Dr Anand’s research would save many babies from having unprotected pain to mitigate the situation.

Shortly thereafter, 2 years after Jeffrey’s death, the American Society of Anesthesiologists and the American Academy of Pediatrics each produced statements on the appropriate use of analgesia in neonates. AAP stated that it was no longer ethical to perform surgery on preterm babies without anesthetic.

The November 24, 1987, headline of the New York Times covering the Lawson story read ‘‘Infant’s Sense of Pain Is Recognized, Finally.’’

A leading journal declared that: “Failure to treat treatable pain in infants and children is both inappropriate and unethical.”

Clinical practice in anesthesia and cardiac surgery changed.

American Pain Society now awards the annual Jeffrey Lawson Award to outstanding pediatric pain clinicians in memory one poor infants tragic death.

The public concern and outcry, namely the attacks on Anand and the tireless advocacy of Jill Lawson, provided the engine to move change forward.

Science provided the knowledge base for the public outcry.

Without the public outcry, knowledge would have taken years to be implemented into clinical practice.

The public outcry was generated by common people. By a mother who wanted to be heard.

There was a sharp increase in the number of publications on pediatric pain studies between 1981 and 1990 and a dramatic increase in articles on pain in neonates in the mid 1980s.

We now therefore know that:

Poorly managed pain has serious short and long term consequences because infants remember pain and suffer physiological consequences of untreated pain even 9- 12 years later.

If were do not give babies pain medication it can affect them in the following ways:

  • Pain ratings were higher at the 4-6 months routine vaccination for boys who were circumcised without analgesia than for girls or uncircumcised boys.
  • It affects their sensory processing, which is the way they perceive sensation, even at 9-12 years of life if they were exposed to pain in their infancy.
  • It may impair the maturation of the brain.
  • They may have reduced visual abilities.
  • They may have poorer language outcomes.
  • They may have greater internalizing behaviors.
  • Appropriate pain relief after trauma decreased the risk of developing posttraumatic stress disorder in children at 12 months. It affects their response to pain later on in life.
  • Inadequate pain relief and the memory of painful experiences of procedures reduced the effects of adequate pain relief in subsequent procedures.

 

Jeffry Lawson’s memory lives on and has impacted millions of lives all over the world, because one woman did not let go.

One woman stood up for what she believed in.

“I had some second thoughts about pursuing it,” Lawson says, “but I have learned a lot and I know I’m doing the right thing.”

Her intention was not to condemn/ initiate legal action against an individual or an institution. She had a problem and she wanted a solution. She wanted people to know about the problem, so that someone somewhere would maybe work out a solution.

“I think what they’re saying is that there’s no way to anesthetize very tiny or weak babies so the choice is not doing the surgery or doing it under horrendous circumstances. I’m not saying never do it, but I would want to think long and hard.”

 

If it is you who is wondering whether your battle is worthwhile, even when it seems like you are on the losing side- don’t give up. It is worth it.

If your little concern doesn’t even seem significant, even if no one seems to care, don’t give up. It is worth it.

If you have the government and science stand against you, but that little voice inside you cannot accept it, don’t give up. Don’t let that little voice die.

You never know how that little action of yours is going to change the world, just because you believed.

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References:

http://www.dolor.org.co/articulos/MOderna%20historia%20dolor%20pediatrico.pdf

http://journals.sagepub.com/doi/pdf/10.1177/0194599816636100

Science is not enough: The modern history of pediatric pain. Patrick J. McGrath

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This entry was posted in pain, parenting, premature infant, Uncategorized and tagged , , , , . Bookmark the permalink.

6 Responses to What do you think is worth fighting for?

  1. Love Alchemy says:

    Great information and always needed reminder/encouragement to keep moving forward sometimes against the grain. Thank you for this.

    Liked by 1 person

  2. Love Alchemy says:

    I find resonance and inspiration with your blog and have nominated you for the Myster Blogger award. The Rules are here: selfreflectionhealing.wordpress.com/2017/09/08/fabric-weaving/.

    Like

  3. Pingback: Nominated for the Mystery Blogger Award :) | Der Sonne folgen

  4. Pretty! This was an incredibly wonderful article. Many thanks for supplying
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