Article by Tanya Coonan, mam to Lillie
Stop cruel attacks on mums like me - who choose to give birth to a baby who can't survive
This article first appeared in the Irish Independent, 30 November 2016
I had never met this man, but his words were the cruellest thing anyone had ever said to me. "You toyed with your child's life, you allowed it to be born, suffer and die just so you could feel better about yourself," he wrote. No mother should ever have to read those words, but as the abortion debate gets more toxic and misinformed, attacks like these seem designed to make mothers like me fearful of speaking out about our children and their stories.
Let me make one thing clear. My daughter Lillie did not suffer. As her mother, who loves her more than life, I would never have allowed that to happen. She was safe and protected while I carried her, and she was free of pain as she passed away in my loving arms.
I lost Lillie to a condition called iniencephaly, a neural tube defect, rather like anencephaly. I am so blessed to have carried her and held her, and to know that we wrapped her in love for her short life, before and after birth.
My little angel was wanted and loved, and she knew I would never, ever give up on her. Lillie was one of identical twin girls, and she defied the odds since medical professionals doubted her survival and only gave her days to live in my womb. At just 13 weeks pregnant, I was told she would not live for much longer and an abortion in Britain was suggested by the doctor in a major Dublin maternity hospital. I adamantly refused.
I'm happy I refused, because at 35 weeks I gave birth to my beautiful twin girls. A medical team were waiting for Lillie her to escort to Temple Street if she showed signs of long-term survival. To me this showed they had hope too, but unfortunately it wasn't to be.
In a recovery room I held my daughter, and I smiled at her beautiful baby face and kissed her warm, soft cheek and held her tiny little hand. If abortion had ended her life before birth, I would have never received all the gifts Lillie gave to me. She showed me that even the most striking imperfections are beautiful, and she was so beautiful.
The love she has given and left with us, the pride I feel in the strength she showed, help me overcome the grief in my heart. I am forever grateful that she fought to come and say hello to us, and that we could have a proper goodbye as she drifted to angels in my arms. Abortion would have taken all this away from me.
I feel that the voices and experiences of families like mine are not being heard enough in this debate, but what's worse is that the medical reality is being distorted by the misinformation which seems to be everywhere.
We've now arrived at the appalling position where mothers who did not abort their beautiful babies are wrongly and most unfairly being accused of making their babies suffer. This is not just untrue, it is cruel and unacceptable and it adds so much distress to the crippling sorrow of having lost your child.
So let me share the medical facts, not so much to answer the cruelty of strangers on Facebook, but to reassure parents who might be facing a diagnosis that their baby will not live for long after birth. There is no medical evidence that babies with any life-limiting condition suffer pain before birth. They are cocooned in the womb, safe and warm, and shielded from harm.
Sometimes I see families in social media groups wonder if babies with very severe conditions such as anencephaly or Potter's Syndrome suffer while in the womb, and misunderstandings arise in regard to what these conditions can mean for baby after birth. Dr Marty McCaffrey, a neonatologist who spoke at a major Perinatal Care conference in Dublin in January, told us that there is no evidence in the medical literature that any of these severe conditions causes pain or suffering for baby before birth. With Potter's Syndrome for example, low amniotic fluid can lead to some compression of the wall of the uterus on the baby, but there is no evidence that this causes distress to the baby.
He also pointed to research published in the medical journal Prenatal Diagnosis in 2011 which observed that, with the right medical care, these babies pass away peacefully after birth. That was my experience and it should be the experience of every parent in an Irish hospital if the right care is provided.
As palliative medicine consultant, Dr Pauline Kane, explained to me, sometimes babies with life-limiting conditions will have difficulty breathing after birth. In such situations oxygen can be provided and any other evidence of distress can be managed with good perinatal palliative care, which provides support to parents and baby before and after birth. With access to this care, any symptoms can be promptly identified and manged in consultation with the baby's parents, and in the rare cases where symptoms are difficult to manage, medication can be used to alleviate distress.
No parent should fear that their baby would suffer or suffocate or be without good care, and ensuring access to good perinatal palliative care should be a top priority for our Minister for Health, Simon Harris. It saddens me that he will not meet with the group Every Life Counts, which represents so many parents like me, and who want to discuss better alternatives than abortion with him.
He needs to listen to the lived experiences of families who have loved and lost their babies, and who know that the gift of time brings healing. For those families, can I also ask for some kindness and respect in the debate around abortion, and for an end to the misinformation which frightens families, and which is used to cruelly attack mothers who are already grieving the loss of their beloved child.
