Consensus over disabled baby's fate a worry

Ireland has certainly changed

Ireland has certainly changed. Recently, I was listening to a radio programme that had just covered the very upsetting case of the 17-year-old girl who is carrying a child with anencephaly, and who is seeking an abortion. After an ad break, the comments from listeners concerned the nuisance value of election posters.

There is virtual consensus that the best thing for this girl and her child is that she be allowed to travel to have the life of her child ended. I would never condone forcing anyone to carry a child, disabled or otherwise, to term.

A police state where women suspected of being pregnant could be prevented from leaving the country would be utterly repugnant. That is not at all the same as believing that abortion is the best, or even the least bad, solution in these cases.

At the time of writing, no decision has been made by the courts. None of what follows is directed at Miss D. Anyone taken into care has already suffered significant pain in her life. She is young, vulnerable, and facing a reality that brings older women in stable relationships to their knees with grief. Her baby has a condition that means he or she will be born only to die, if he or she survives birth at all. Her reaction and her choice are completely understandable and no one who has not faced the situation can judge her. Nor is it a commentary on any other mother who has chosen abortion. It is a commentary on our attitudes as a society to profound disability.

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It is deeply disturbing that the consensus is that a child with a severe disability should be terminated. Is it not rather chilling that counsel for Miss D could suggest that simply because a baby will not live very long, he or she is not entitled to the protection of the Constitution? I wonder how parents of children with severe neurological damage felt when their babies were described in this way.

Lisa Blumberg, who is pro-choice, writes in the online disability rights magazine Ragged Edge about her disquiet that termination is presumed to be the automatic preferred choice when ante-natal screening identifies a disability.

Describing how parents explain the choice of abortion to siblings of the child, she wonders "how children specifically encouraged to see disability as an all-encompassing burden both for the person who has it and for others, will interact with the people with noticeable disabilities that they will most certainly meet in life".

It is an important point. More important, perhaps, is that as well as the dark void of grief that people are plunged into when they receive a diagnosis like this, they also have to face the fact that if the baby lives long enough to be discharged, there is no automatic system in place to take care of all the practical needs of the family.

Voluntary agencies do a wonderful job, but many people are still left attempting to provide 24-hour care for periods of time, in the midst of struggling with their own grief and pain.

What kind of society are we that we shrug and accept this? What kind of society have we created that the best we can offer an already vulnerable 17-year-old is support in prematurely ending the already short life of her baby?

Advocating abortion is an attempt to avoid the reality that pain and death are grimly present in life and there are situations of excruciating suffering that nothing makes better. The news that a baby is profoundly disabled and will not live long is heart-crushing. Once that news is heard, there is no easy way out. There are no tidy solutions. Most of us do not want to deal with that fact.

Let me reiterate that no one should be forced to carry a baby to term.

However, Monika Jaquier, who carried her own baby with anencephaly to term, surveyed 303 mothers who made a similar decision and none regretted it.

In contrast, there is some evidence that a significant minority of women who chose to abort a baby with abnormalities fare poorly when it comes to measures of distress and depression.

For example, a study published in the journal, Ultrasound in Obstetrics and Gynaecology, states that women who terminate, especially in the second trimester, had poor outcomes at six weeks, six months, and a year. Rates of depression were 32 per cent at 12 months. In short, a third of women, far from experiencing closure, were experiencing significant depression a year on.

A second-trimester abortion generally involves a prostaglandin-induced labour and possibly foeticide in the womb first. It is distressing for the woman, but also for medical staff.

There is such unease about abortion, and not just eugenic abortion, in Britain that there are now more and more doctors refusing to perform the procedure. The lack of doctors has been described as a crisis, and various solutions have been suggested, including making it a core part of all doctors' training. The only problem is that a conscience clause exists. It is quite difficult to blunt the sensitivities of doctors to the contrast between abortion and their efforts to save life.

Jeannie French, an American woman, discovered that one of the twins she was carrying had a severe neural tube defect. She decided to carry to term. In a moving testimony to a US House of Representatives committee, she said: "We do not need to help a dying child die. Not one moment of grief is circumvented by this procedure."

She went on to describe how two critically ill Chicago infants received her daughter Mary's heart valves.

"Our daughter, living less than a day, saved the lives of two other children. Which of us, even after decades of living, can make the same claim?"

As to the alleged lack of response of these babies, Monika Jaquier, mentioned above, has this to say.

"Some children [ with anencephaly] are able to swallow, eat, cry, hear, feel vibrations (loud sounds), react to touch and even to light. But most of all, they respond to our love: you don't need a complete brain to give and receive love - all you need is a heart."