'Although we have a pro-life identity, we do not have the healthcare that supports parents and newborn babies who have complex needs'

This week, four women spoke out about the stigma of having to travel abroad to terminate pregnancies with fatal foetal abnormalities. Such cases are not rare, according to an academic studying the area

WHEN RUTH BOWIE, Arlette Lyons, Amanda Mellet and Jenny McDonald allowed their photographs to appear in The Irish Times this week they seemed to open a new front in the abortion debate. It took the sacrifice of their privacy, and the distressful retelling of stories about much-wanted pregnancies with lethal abnormalities and tragic journeys to the UK, to personalise the issue and reduce the TD Mick Wallace to tears.

Yet it was hardly a surprise. Ten years ago, on the eve of the 2002 abortion referendum, the masters of the country’s three main maternity hospitals said they supported abortion in precisely these types of cases. Nothing was done. Neither legislation for the X case nor the deliberations of the government-appointed expert group are likely to have any bearing on the situations of these women.

The State doesn’t even have a handle on the numbers. A patient at Liverpool Women’s Hospital – just one of many tertiary referral hospitals in the UK – was told that two or three Irish couples arrive every week for terminations in lethal-abnormality cases.

“There could very well be that many. Really, there is no way of capturing the number of women facing that decision in the 19 publicly funded maternity units in Ireland,” says Joan Lalor, a 41-year-old associate professor at Trinity College Dublin whose professional clinical expertise and doctoral research are based on women’s experiences of foetal-anomaly diagnosis.

Her studies suggest that about 2 per cent of Ireland’s 74,000 live births each year – or 1,480 – will be diagnosed with a foetal abnormality. Of these, half – or 740 – will be defined as serious, as in a lethal abnormality or a “horrendous” condition, such as a cardiac defect or diaphragmatic hernia, where surgery may result in death, the child may be left with a “significant deficit”, or both. Of these serious cases, about 10 per cent – or 74 – may be terminated.

These figures are by no means definitive, however, as they are based on a voluntary sample of those who got as far as the 18- to 20-week “big scan” in the maternity system. An unknown number of women arrange private scans in the first three months, then self-refer for UK terminations. They appear in no studies.

“Apart from that, there is no system of statutory reporting of all babies diagnosed with congenital abnormalities. None,” says Lalor. “So when you give that diagnosis to a mother diagnosed with an Edwards-syndrome baby, there is no statutory obligation to report that. If she goes to the UK there will be no registration in Ireland of that birth with Edwards syndrome.”

The numbers also tell us nothing of the women who carry a baby to term because they felt they had no choice. “How many do so because they were not informed of the termination option, or because they hadn’t the money, or because they feared being criminalised or being thrown out of their social circle or – in cases that I know of – threatened by in-laws?” says Lalor.

“Years ago, for example, a diagnosis of Down syndrome was made at birth, so a baby was born unexpectedly with the syndrome. You can’t ask these parents or siblings now what would they have done had they known about it in pregnancy. What do you say? ‘Yes, I would rather not have my brother or sister’? It would be like asking, if I had a diagnosis that my child would grow up to be an alcoholic or a criminal or die of an overdose, what would I do?”

Though small in percentage terms, these cases remain “extremely significant because of the distress”, says Lalor. “Every day there is likely to be somebody, sitting in their kitchen, making a horrific decision, parents who have had their whole world pulled from under them. I just don’t think that society really understands this. The critical thing to remember is that these couples are absolutely distraught, terrified of doing the wrong thing. The male partner is often like a rabbit caught in headlights. The woman is worried as to whether the baby is feeling pain, or how her husband would cope if she gave birth to a stillborn baby or a baby that died after birth; how would her children cope; did they have the family situation and support where they could give birth to a baby that might not die but would have significant, serious, complex needs and [require] a huge amount of support?”

She pauses. “Although, as a country, we have a kind of pro-life identity, we do not have the healthcare system that supports these parents and newborn babies who have complex needs.”

Yet, in the absence of any guidelines, the response from the healthcare system is profoundly inconsistent. “It nearly comes down to the hospital that the woman books into, down to the very nature of the unit they book into, to the very nature of the individual they might meet,” says Lalor. This week, in an email to this writer, a woman said she was told by her (private) consultant “that I needed to think of this as my time with my baby. Termination was never mentioned . . . and as a result, I felt stigmatised even thinking of it as a possibility.”

But neither was she offered any emotional or psychological support or counselling. “While I absolutely loved and cherished my unborn baby, and I tried to cherish my pregnancy as I had been advised, it was also the most traumatic, terrifying, isolating and hellish experience of my life.” Her baby was delivered by Caesarean section at 35 weeks and lived for a few “phenomenal” hours, during which the same consultant saved her life.

Consultants are in murky legal territory. Most people assume that because the right to abortion information and the right to travel were legislated for after the X case, doctors have no legal difficulty. “Yes, you have an entitlement to information and you have an entitlement to leave the country,” says Lalor, “but the law is quite unclear about whether a physician in Ireland can assist you in making a referral to an appropriate centre in the UK and give you appropriate medical information to take with you.

“Under much of the original law in the Offences Against the Person Act, it is an offence to aid and abet a termination of pregnancy, never mind to procure one. This is a complete and utter void, and because of it you will not have any Medical Council guidelines and you won’t have An Bord Altranais guidelines to cover the midwife.”

Therefore, she says, how you deal with a patient “all falls down to an individual decision, to your skills, to how often you deal with cases like this. You’ve got to acknowledge that this is absolutely horrific for the woman. You are trying to work out what she wants to do – but even the introduction of that conversation is very anxiety-provoking, because you simply don’t know what the thinking is of the woman in that regard. You’re almost left waiting for the woman to ask the question.”

Ten years on from the three masters’ statement, that is where we stand.