Nick’s Story – Grace and the Value of Every Human Life

Both Lives Matter | Stories | Nick’s Story – Grace and the Value of Every Human Life

My wife, Janice, and I were living in the northwest of England and eagerly anticipating the birth of our second daughter. A few months into the pregnancy, Janice had a routine ante-natal scan.  We received the news that there were major problems. The baby’s head looked far too small, and there wasn’t enough fluid surrounding it in the amniotic sac.


A further scan listened to mother’s and baby’s heartbeats. I could hear Janice’s heart beating firmly and loudly, albeit faster than normal due to her anxiety. You had to listen more carefully to discern the second heartbeat. It was fainter, more hesitant, but it was there! We were hearing the heartbeat of our baby. Of course that heart had been beating for months, unheard by anyone else, inside the womb. But hearing it for the first time brought home to us how this was an individual person, totally dependent on its mother, and yet already having a separate heartbeat and its own identity. We were in the middle of a medical crisis – and those two sets of heartbeats made us acutely aware that, whatever happened next, two lives were at stake.


Janice asked the nurse, “Is it supposed to sound like that?” The nurse, after listening more intently, ran to fetch a doctor. The doctor confirmed that the baby’s heartbeat was slowing down. He announced, “Your baby is dying. We’re going to have to act quickly if we’re going to save it. We’ll have to carry out an emergency Caesarean section.”
When Grace was born she weighed just two pounds and thirteen ounces (1.28 kg). That’s less than half the normal birth weight for a healthy baby. There was no holding our baby in our arms for that wonderful moment of bonding – she was rushed straight to the Special Care Unit and placed in an incubator.


Grace was diagnosed with Familial Dysautonomia, an extremely rare fatal progressive neurogenetic disorder. It recently figured in a landmark ‘wrongful birth’ legal case in the United States where parents tried to sue doctors for not detecting the condition during pregnancy, on the grounds that a child with such a condition would be better off being aborted. Grace needed around the clock care for her entire life, and would not live to see her fifth birthday.


I remember one evening in particular. I was sitting beside Grace’s cot, listening to her wheezing breath as she slept fitfully. I noticed how many medical staff were coming in and attending to her. I looked at the array of machines that were monitoring her vital signs. I tried to read the chart at the end of her cot, wondering what on earth the many different medications were supposed to be doing. Suddenly I thought, “This must be costing thousands of pounds!” I tried to calculate the cost of all the resources that were being funnelled into keeping Grace alive. I estimated that her medical expenses for just one week probably amounted to more than I was earning in a year! At that moment I was profoundly grateful to be living in a nation that would provide our child with such care. I also reflected on the fact that, if Grace had been born in many other countries in the world, she wouldn’t even have lived long enough to make it through the first day of her life. I asked myself, “How much is one human life worth?”


The National Health Service was prepared to spend a huge amount of money to keep Grace alive, and that’s how it should be. We would be outraged if babies were left untended to die because somebody somewhere wanted to save money. Why? Because we recognise that even the most fragile human life has an immeasurable value.
That led me to ponder on what I would pay to save Grace’s life. I knew immediately that I would willingly mortgage or sell everything we possessed if it could enable her to live. That is the value of a human life. I also realised that I would willingly lay down my life, if necessary, for this tiny baby that seemed determined to cling to life against all the odds. As a father, her life was worth more to me than my own life. That is the value of a human life.

Furthermore, this estimation of the worth of Grace’s life didn’t suddenly pop into being at the moment of her caesarean delivery. It extended back to when I had felt her little feet kicking against Janice’s belly, and when I had heard her little heartbeat slowing down inside the womb. Grace was only a week or two old, but already she was teaching me an important lesson about the value of a human life.
The strange thing is that, while I was thinking this through, I was sitting in a hospital that was the largest provider of abortions in that region of the country. Both before and after the moment of her birth, everyone had spared no effort to save Grace’s life. Yet in another part of the same hospital, medical staff were using their training and expertise to end the lives of unborn children, many of whom did not suffer from anything like Familial Dysautonomia. So what did that say about the value of their lives?
Is another human being’s life only of value if they are loved and wanted? Or is there something special about a human life that gives it an objective value, irrespective of whether anyone cares for it or not?
Some might see these questions as being religiously motivated, and it’s true that I am a Christian believer. But, for me, these questions go far beyond religious dogma or one’s personal beliefs about the existence of God. The inherent value of a human life is what inspires and informs the whole field of human rights, and that is an area of concern common to religious believers and to atheists or agnostics.
The basic concept behind all human rights law, including major international treaties, is that a human life has an objective worth that is not derived from whether they are valued by others or not. Martin Luther King taught us that if someone is despised by others, perhaps because of their race, gender or sexual orientation, that does not lessen their value. They still deserve to be treated with dignity, simply because they are human beings.


Grace eventually died just before her fifth birthday. The years we spent caring for her were difficult and exhausting, but were also full of surprising joys, and we treasure our memories of her.
I have no doubt that Grace’s life was indeed worth all the time, effort and money that was expended on her care. And I can see no distinction between the concern and care that was devoted to her survival before her birth and after her birth. It wasn’t as if she had no inherent value as a person the moment before her birth and then suddenly became precious and valuable the moment after her birth. Such a crude, almost magical, distinction seems more dogmatic and illogical than the claims of any religious sect.
If Grace’s life was so important and valuable, both before birth and after birth, then on what grounds can anyone say that the lives of unborn children that are unloved and unwanted are not equally valuable? This self-evident truth led me to a conviction that has never left me. All human life is precious. And every child should have an equal right to be born.


That’s why I maintain that it took the laboured breathing of our desperately sick and underweight baby to teach me the value of a human life.


Nick Park is Executive Director of Evangelical Alliance Ireland and author of “Birth Equality: How a Child Called Grace Taught Me the Value of a Human Life.”