Teddy Houlston’s short life tells us so much about what it is to be human

http://www.theguardian.com/commentisfree/2015/apr/26/teddy-houlston-valuable-life-organ-donation

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If someone were to ask you to explain what it means to be a person, you would probably start with a mental picture of somebody you know. You might think first about physical characteristics such as their size and shape. You might then move on to other facts about them, such as how old they are and any special abilities they have, such as being clever or musical.

But the chances are that pretty soon you would find yourself thinking not about what a person is physically, or what they can do, but about what a particular person means to you. You would want to talk about how they came into your life, how they influence your day-to-day existence and how they make you feel.

When we think about what it is for someone to be a person, we are much more interested in what we value in them than in technical facts about them.

Teddy Houlston’s parents knew six months before he was born that his life would be very short. Sometime in the first few days and weeks of his development in the womb, Teddy’s brain had stopped growing, a rare condition known as anencephaly.

It was possible he would not survive birth and highly unlikely that he would live for more than a few hours.

For Jess and Mike, Teddy would be a precious person whether he lived for a few days, a few hours or if he never drew breath at all. They knew that the life of their son would be no less valuable for being short.

But Teddy’s parents wanted their son to mean even more than that. They wanted his life and death to be of value to others, as well as to them.

I am a consultant in paediatric palliative medicine in Cardiff and I met Teddy’s parents a couple of weeks before he was due to be born. My role was to explore with them what might happen to Teddy after birth and to put into place arrangements to keep him and his family comfortable and supported during his short life.

His parents wanted two things. The first was that Teddy should be baptised. The second was that he should be able to donate his organs when he died.

Both were celebrations of Teddy; their son who didn’t only die, but had also lived. Both were ways in which his status as a person, whose life had dignity and value, could be demonstrated beyond any reasonable doubt.

At birth, a child with anencephaly is essentially normal except for the absence of brain tissue. There seemed to me no obvious reason why his organs could not be offered for donation. And as a physician, I was aware of the desperate need for organs among patients – adult and child – across the UK and the world.

At the same time, I didn’t know if there might be technical reasons why donation would not be possible.

I contacted my nursing colleague Angharad Griffiths, who works with the National Health Service Blood and Transplant Service. She met Mike and Jess and, with characteristic sensitivity, explored the issues with them.

Although I had met Jess and Mike in my capacity as a palliative medicine consultant, I was also thinking as a clinical ethicist. One of the purposes of ethics in medicine (perhaps its main purpose) is to protect the vulnerable. There is rarely ethical justification, for example, for taking organs from adults who do not offer them. And it is hard to imagine someone more vulnerable than a newborn baby with anencephaly. Teddy couldn’t give consent to donate his own organs.

Could we justify taking them, even at the request of his parents? I felt the answer was “yes”. Being a person is not simply an ability to give informed consent, any more than it depends simply on how long we live. The value of a person is expressed by everything they mean to everyone, not just what they mean to themselves. By suggesting that Teddy’s organs be donated, his parents enabled him to give something precious to a complete stranger in a city 250 miles away, whose own life and dignity as a person (and that of his family and everyone who knew him) was utterly changed as a result.

Furthermore, by raising the issue in the press, Teddy’s parents hope to encourage the parents of other children who cannot survive to consider donating organs. If they succeed, Teddy’s life and death will offer those parents, too, a chance to give a greater meaning and value to the short lives of their own children.

What Teddy’s parents have achieved is to allow a boy whose life lasted only 100 minutes the chance to use it to enable dozens of other people to flourish. It is quite possible that, thanks to his parents, Teddy will have been able to help more people than there were minutes in his life. There are very few people who can claim that.

So what lessons can we learn from the life and death of Teddy and the extraordinary courage and tenacity of his parents? There are two things. The first is to ensure that policies in this area do not reduce the idea of what it is to be a person to a single dimension, such as brain-stem function, IQ or chronological age.

Teddy’s life was a life of meaning and value despite (even because of) the fact that he had no functioning brain and that his life lasted for a shorter time than most people’s birth. In the short time that he lived, Teddy flourished, because he contributed to the flourishing of others.

The second is that, as professionals and as a society, we must make it as easy as possible for parents to offer their child’s organs.

It is not always possible – there may be medical, technical or even ethical reasons why it is not appropriate in an individual case – but there are very few situations in which it should not be considered.

Professionals caring for a family can be uncomfortable raising it, because the compassion they feel leads them to avoid a subject they fear might be distressing.

What Teddy Houlston and his family have shown us is that such compassion should lead us rather to encourage those discussions. Organ donation is a way in which a person’s death can represent dignity and meaning, not just empty loss. It is a person, whatever their age or cognitive ability, demonstrating what Albert Schweitzer once described as “a sense of solidarity with all human beings”.

Richard Hain is a consultant and clinical lead in paediatric palliative medicine, Wales, and chair, Cardiff and Vale university health board