Parents whom I know whose baby was diagnosed with a life-limiting condition before birth not only had to cope with the devastating news, but with desperately scrambling to pull together a patchwork of services so that their baby could go home with them for the months that he lived.
Charities like the Jack and Jill Children’s Foundation were wonderful, as was their own GP, but nothing was easy. There was no automatic medical card, no wraparound palliative care service.
People whose babies live beyond infancy often face even grimmer battles to secure services, becoming not only chief carer but full-time advocate. Many burn out and their own health suffers.
€30,000 would help many of these families. But instead, they watched this week as the Government kowtowed to the badly-named UN Human Rights Committee, which without a trace of irony said that being unable to end a human life before birth constituted "discrimination" and "cruel and inhuman or degrading treatment".
Imagine the message sent to women who continue with their pregnancies – that it is the equivalent of torture, and that being unable to end it warrants €30,000 in compensation.
This is not an attack on Amanda Mellet, to whom the compensation was offered. It is not surprising that some women feel unable to continue given the negative reaction of so many, including obstetricians.
Implicitly, and sometimes explicitly, the message is that continuing is pointless, because the baby is so disabled and will have such a short life.
After all, if you ask your doctor in your devastation what she might do, and she says, ‘I would travel’, how strong would you have to be to resist that message?
There is also an unspoken assumption that there are two kinds of mothers: those who can bear a terrible pre-natal diagnosis, and those who cannot. No one can bear this news. It shatters everything, hopes, dreams, even self-image as a parent.
Hasty decision
The difference between those who continue with a pregnancy and those who do not often comes down to support. If an empathetic and compassionate doctor breaks the news and assures you that there is no reason to make a hasty decision, and tells you that there is a comprehensive seamless service that will shelter and support you every step of the way, you might rediscover value in carrying on parenting this fragile, damaged little son or daughter until the end comes.
How often does that happen?
If friends and family rally to protect you from well-meaning but insensitive queries, you might find, as many do, that even in the midst of shattering grief a fierce protectiveness grows towards your little child.
That was the experience of mothers in Cork University Maternity Hospital who were assigned to the care of a specialist bereavement midwife. It is the experience of thousands of families, because the majority choose to continue, but they are now almost afraid to admit it, because the dominant voices declare it is pointless or even damaging to do so.
So vicious is our culture, that Tanya Coonan, one whose twin daughters died shortly after birth, wrote this week that she has suffered social media attacks for not aborting and had even been accused of allowing her beloved daughter, Lillie, to suffer to make herself feel better.
She wanted to assure parents who have received a tragic diagnosis that the allegation that babies like her daughter suffer is not only utterly lacking in compassion, it is also utterly untrue. Any symptoms can be promptly identified and managed, and in the rare cases where there is pain or discomfort, medication alleviates distress.
Powerful affirmation
If properly supported, parents can realise, like Coonan that “even the most striking imperfections are beautiful, and [her daughter] was so beautiful”.
It becomes a powerful affirmation that a human being’s worth does not lie in intellectual ability, or physical perfection, or length of life.
Doctors, oddly, are often more uncomfortable than lay people are with death, which to medics often seems like failure. Offering abortion information seems like doing something, whereas all that may have been achieved is alleviating the doctor’s own discomfort.
The medical literature says that terminating because of a disability leaves people at risk of mental health difficulties such as depression, but how many mothers and fathers are told that?
Minister for Health Simon Harris won't meet Coonan or her group, Every Life Counts, www.everylifecounts.iee, and has never met the other groups like One Day More, onedaymore.ie, who represent parents of babies with life-limiting conditions. They want to tell him that there is a better way than abortion.
While there have been some improvements in palliative care for babies who get to go home, a report this month identified the need for additional staff resources, ongoing funding of professional education, and improved respite and bereavement care. Wraparound care in maternity hospitals is still hit and miss.
Maybe the reason that Harris won’t meet them is because it would require the State and the Minister to treat these babies and their parents with the kind of dignity and care that respects the human rights of all, even the most fragile.