When is a child a child? Or to put it another way, when is a child regarded as a full member of human society, entitled to the love and care of her or his family and the support of the community and state? In very different ways, two photographs in this newspaper highlighted that question once again this week. First, there was little Adam Nash, cradled in the arms of his seriously ill sister, Molly, whose life he was conceived to save. Secondly, the glowing face of Kathryn Sinnott, as the award of £255,000 from the High Court vindicated her belief that her adult son Jamie, although autistic, had been as entitled as any other child to an education. In addition, the State's responsibility to Jamie and others like him did not end at 18.
Very different cases, but both raise troubling questions about the value which we place on human beings. Ms Sinnott may have won a victory, but she is painfully aware that had Mr Sinnott been educated properly when he was a child, his whole life could have been altered. Instead of being non-verbal, non-toilet-trained and completely dependent, evidence shows he could have achieved so much more, perhaps even to the extent of earning his own living. Further, there are literally thousands of children in the same position, whose families may not have the energy to pursue the Government with such tenacity.
The landmark O'Donoghue case in 1993 declared that children with severe disabilities were entitled to free primary education geared to their needs. Since then, while something may have been done to implement the letter of that judgment, little has been done to implement the spirit of it.
It is as if the State took a calculated gamble that these most vulnerable of citizens and their exhausted families could be held at bay indefinitely. Money came before the rights and needs of children. Under the Constitution, all children may be equal, but in practice, because some disabled children's needs come with a high financial price tag, they will not be treated as equal by the State and will not be helped to fulfil their potential. Some children, due to disability, are not regarded as full citizens. Which is where the worrying aspect of the Nash case comes in. Adam Nash, born on August 29th, pictured as he was in mid-yawn in this newspaper last Thursday, is a beautiful baby, obviously adored by his sister. The caption stated the photograph was taken in the Mall of America in Minnesota. The Mall of America is one of, if not the biggest, shopping malls in America, where the boast is that you can buy anything you want. The location provides an ironic counterpoint to the story, given technology has now given parents the ability in some cases, if not exactly to "buy" a baby, at least to produce one to precise requirements.
In Adam's case, the requirements were that he be free of the inherited disease of Fanconi anaemia, and that he be compatible as a donor of cells to potentially save his sister Molly's life. No one would point the finger at the Nash parents because they love their little girl and want to save her life. Nor could they be blamed for not wishing to have another child with Fanconi anaemia. In six-year-old Molly's case, it meant she was born without thumbs and can walk only with a heavy brace. Molly has had a great deal of illness. Fanconi anaemia often, but not always, results in death in middle childhood, as the condition progresses to full-blown leukemia.
Donations from a non-genetically matched donor have a 5060 per cent success rate. Using a donor like Adam, with his perfect genetic match, increases Molly's chances of survival to something like 85 to 90 per cent.
But what is the cost? Lisa Nash, the mother of the children, was quoted as saying she wanted a sibling for Molly free of the disease and the only way of ensuring that was to become pregnant naturally and have an abortion if the child was found to be carrying the disease. This she could not contemplate and it is to her credit that she could not.
But perhaps we need to think more deeply about the in vitro fertilisation process. The couple had made four previous unsuccessful attempts, but in the attempt which resulted in Adam, some 15 embryos were created. These were genetically tested and in the words of one of the doctors involved, the Nash family were guaranteed a healthy baby boy who was a perfect match for Molly's needs. One other embryo was found compatible but discarded because it was damaged. Presumably the others were discarded also.
But what exactly were the Nash family discarding? Some would say clumps of cells which had the potential to become children. This is at best disingenuous. The whole expensive, painful and invasive IVF exercise is designed to produce human life, not clumps of cells. In Ireland, this is recognised by the fact that all embryos produced by IVF must be implanted.
The key question is, what is the qualitative difference between Adam Nash and the discarded embryos? The only difference was he was found to be healthy and compatible as a donor and therefore was implanted in his mother's womb. The others were not implanted because they were found lacking. So Adam Nash went on to be what one doctor described as "the most wanted and loved child" in America. What did that make the discarded embryos? The least wanted and most unloved children in America? Or embryos not even worthy of the term child, although they were conceived in exactly the same way and with the same aim as the now-adored Adam?
The reality was there was no qualitative difference between Adam and his siblings conceived through IVF, except he met the criteria of his parents, and they did not. As a result, they would not be given room in their mother's womb to go on to fulfil their potential, and he would.
We are shocked that a woman like Kathryn Sinnott had to fight so hard to vindicate the rights of her son who has a disability. Why, then, are we not shocked that the Nash embryos were discarded, in some cases because they carried a disease and in others because they had not the same potential life-saving ability as Adam had?
Genetic screening carries huge ethical and moral questions. How soon will it be that a child will be denied the status of child because he carries a gene for aggression, homosexuality or red hair? In a world which already discriminates against categories of born children, let us not take one further giant step into discrimination by declaring a child can only be born if he or she meets the requirements of parents or of society.
bobrien@irish-times.ie