Abortion not the only answer to life-limiting conditions

Can we, for once, focus on perinatal hospice care instead of abortion?

We’ve just gone through another two weeks of a stormy abortion debate in which there has been endless discussion as to why abortion should be legalised when the baby has a life-limiting condition, but almost no mention at all of abortion alternatives.

Because of the way the debate has been framed, one would be forgiven for thinking there is no alternative. Most people in Ireland have probably never heard of perinatal hospice care, much as most don't really know what is meant by "fatal, foetal abnormality".

Perinatal hospice – or perinatal palliative care – is a model of compassionate care that begins at diagnosis. As author Amy Kuebelbeck explains, perinatal hospice is not a place it is more a frame of mind, and is a beautiful and practical response to one of the most heart-breaking challenges a parent faces.

It means continuity of care so women see the same medical team. It means providing factual information so parents are properly informed about the condition, and understand their baby is not suffering and will be cared for after birth.

It’s about providing bereavement midwives and counsellors, and ensuring the necessary medical support is provided throughout the pregnancy and at birth. Parents are encouraged to draw up a birth plan, and, when baby is born, the family has its own room. A specialist photographer, such as those who work with Now I Lay Me Down to Sleep, can be arranged, as well as a chaplain if that is desired.

This care gives parents the gift of time with their baby, and when you’ve been told your child may not live for long, time is all-important. You hang on to that time, it is precious. As one mother so poignantly and powerfully told us: “You learn to pour a lifetime of love into those hours or days.” These parents have shared their stories with the support group Every Life Counts, and have proved an important source of information and hope for other parents.

Safe haven

Mandy O’Neill talked about learning to make the most of the time she had with her daughter

Carragh

while she was “fluttering” in the womb, and how she was glad her body was a “safe haven” for her child. Perinatal hospice care could provide counselling to parents so that they can learn, as Mandy did, to make bonds and share experiences during pregnancy while the baby is alive and kicking.

Fiona, whose son Andrew was born with anencephaly, said shared time was spent “singing songs to him, going for walks in the park, listening to the birds”. Those are her memories now.

Aileen Behan was told one of her twins, Lilly Ann, who also had anencephaly, would not live after birth. “But she did. She lived for six days. I’m so proud of her that she lived for six days. She was held and loved by everyone, people said they were coming to hold an angel.”

All of these parents, and many more, are calling for better care for families when a diagnosis of a life-limiting condition is made. Some commentators have claimed that perinatal palliative care is widely available in this country, but the provision of care seems to be very patchy.

One mother attending one of our biggest maternity hospitals less than two years ago had to go home and google “Trisomy 18” since the hospital did not have information. Her son Seán lived for two days after birth with the condition, two days in which they “wrapped him in love”.

Ugly term

My own daughter

Kathleen Rose

is living with Trisomy 13, often described as a “fatal, foetal abnormality”, that ugliest of terms which is not a medical diagnosis and tells us nothing.

I’m lucky, I know. We still have our Kathleen Rose, and as I watch her go to school, and dress up as a princess, and play with her brothers and sisters, I’m aware every day is a gift.

I’m also aware life can surprise us, and Kathleen Rose surprised us all, including the doctors who said she was “incompatible with life”.

Right now there are parents receiving the devastating news their baby has a severe disability and their world is shattered. They need to know there is a pathway to healing that will love and support them and their baby. Doctors should also be aware a new study from Duke University has found women who underwent an abortion after a diagnosis of anencephaly were significantly more likely to suffer depression than those who continued with pregnancy. We are not helping women by denying them this information.

We can see the huge time, energy and resources being poured into pushing for abortion as a solution to a diagnosis of a life-limiting condition. It would be uplifting and inspirational if even a fraction of that time was given to establishing proper perinatal care so that parents could have the gift of time with their sick babies, whose lives are important and have meaning, and who teach us how to love.

Tracy Harkin is a member of Every Life Counts