The University of Southampton

Author: Carmella Codeniera

The anencephalic new-born organ donor

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Amidst an ethical debate regarding organ donation in an ethics and law workshop, the complexity of the discussion inspired me to delve further into the moral and legal implications of organ donation. While it is true that organ donation is a lifesaving procedure, it is interesting that when it comes to infants with life-threatening illnesses, it’s not so easy.

Case study

For example, Mrs Z, a young, overdue, pregnant woman underwent an ultrasound examination and was told that her baby was anencephalic – A condition where no brain is present except for portions of the brain stem and there is a high likelihood the baby will be born underdeveloped and stillborn. Heart and kidney transplants could be possible.

In light of this, the mother decided to volunteer her baby as an organ donor. Despite her wishes, the moral debate began as physicians became uncertain on what steps to take. If they accepted the mother’s wish to donate organs, is it their duty to try and resuscitate the baby if it was still born? Should they accept her wishes at all? When should or could the baby’s death be pronounced?

Moral Panic

Mrs Z’s case is a controversial debate, predominantly due to the moral and legal obstacles to taking organs from a pre-diagnosed anencephalic new-born.

To start, following the mother’s requests would be a way to alleviate the growing shortage of vital organs for organ recipients in need. Organ size restrictions mean that strategies to increase donation rates may not be of much use. However, there have been cases where ‘miracle babies’ have lived long after expected. How do we determine who takes priority?

In addition, under current law, organs can be taken from patients who are ‘brain-stem dead’. Despite brain absence, an anencephalic infant does not meet this criterion as they retain a functional brain stem that can maintain vital functions. So, by law, the mother’s desire to donate may not be permitted. The baby should be treated as they would ordinarily be treated, regardless of determined death. Would we normally resuscitate a still-born infant? Prolong suffering? Yet, if these organs have the ability to save the lives of dying infants, I believe that the organs should be donated, provided the baby does not suffer.

Finally, in actuality, there is no reason why the parents shouldn’t be able to donate the organs of their baby to suitable recipients, provided it follows the death of their child. But… the glorification following the words ‘organ donation’ makes me wonder if the parents were informed on alternative approaches for recipients, such as stem cells or Norwood staged surgery. Were they aware that the absence of a major part of the brain doesn’t imply instant brain death? Is this pure utilitarianism? I believe it should be standard that families who request organ donation from their anencephalic baby should be given concise information and educational material provided on the practice and its implications.

Final thoughts

In my opinion, if there is a way to donate Mrs Z’s baby’s organs without drastically intervening standard treatment, organ donation should proceed. However, the answer differs if a significant alteration occurs. Going above and beyond to prolong gestation on a distressed infant in order to ‘mature’ organs for donation requires moral reservation.

Nevertheless, recent research has diminished the idea of anencephalic new borns as organ donors, with the exception of theoretical debate and case studies. The American Academy of Paediatrics (1992) concluded that organ donation from anencephalic infants should not be undertaken due to the serious difficulties surrounding the establishment of brain death and limited success rates.  

Miracle Baby Born Without Most of His Brain Defying Odds – https://youtu.be/wu47BpI4ld8

Bridging the gap between disability and ability

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Upon starting my Engineering Replacement Body Parts module, the prosthetics joints and limbs lectures sparked a particular interest. It became evident to me that when an individual loses a fully functioning body part, alongside the obvious physical loss, there is also an element of mental loss in their sense of being. There becomes an immense divide between being ‘disabled’ and ‘able’.

Over half of the world’s population suffers from some form of cognitive, motor or sensory disease, and at what expense? The lack of efficient technology?

So… What if there was a way to enhance people’s capabilities beyond their losses, restore motor function and finally bridge that gap between limitation and potential? Luckily enough, we live in a period of time where there CAN be a way. A way we now call bionics.

Bionics is defined to be:

‘The science of creating artificial systems or devices that can work as parts of living organisms’

(Definition of bionics from the Cambridge Advanced Learner’s Dictionary & Thesaurus © Cambridge University Press)

By making it possible to replace whole organs to mimic that of the real ones, whether it be your eyes, ears, legs or even your brain, we are now able to massively improve the quality of life of those who have lost limbs, so they can freely go about day-to-day life like they once did before.

Bionic Integration with Hugh Herr

In an incredibly moving TedTalk in 2014, Hugh Herr explains how bionics shaped his life. After losing both of his legs in a climbing accident in 1982, technological innovation allowed Herr to cure his own disability with optimal support, and in doing so, discovered the beauty of the flexibility in the artificial part of his body.

Through mathematical models, imagining and robotic tools, his bionic limbs were able to attach to his true body through synthetic skins with stiffness variations mirroring his underlying tissue biomechanics. To add to that, through bionic propulsion allowed the bionic limb to emulate normal muscle function, or even at an advanced level. This was critical for Herr and his athletic ability. To add even further, electrodes measuring electrical pulse of muscles communicated to bionic limb so if he thinks about moving, he moves!

He took advantage of this flexibility and returned to climbing, eliminating his disability. Herr, as the head of the MIT Media Lab’s, is now building the next generation of bionic limbs and robot prosthetic that resemble biological materials.

The moral of the story is, despite losing both of his legs, the importance of bionics and the characteristic ability to use electromechanics attached to the body and implant them inside the body meant that Herr’s quality of life only flourished. He did not let it diminish him, nor destroy his self-wholeness. This should be the hope for all those who suffer from a similar story.

What do the ongoing advancements in ‘Bionics’ mean for the future of ‘disability’?

In decades to come, if the progress continues, we could see a world free of disability. Where a hand could have additional functional fingers, or an eye could improve low light vision and zoom in to make faraway objects clearer, or the paralysed can walk primarily based on artificial neural networks and swarm intelligence.

While artificial limbs are not nearly as good as a natural one,  someday, we might advance to the point where artificial limbs might become superior to natural ones, available to everyone that needs it.

That being said, even those with normal physiology have appeared to use exoskeletal structures following the same principles to augment things like human walking, running, climbing etc. In doing so, it reduces metabolite cost and suggests that we are going into a time where these designs can make us stronger, faster and more efficient

To conclude…

Every being on this earth deserves a right to a life free of disability and full of ability at basic physiological function. The ongoing advancements of bionic technology show that as a human race, we are dependent on its growth to optimise our living. So perhaps humans cannot be disabled, but technology?