‘The grief stripped me to the bone’
OVER the last few months, the debate over repealing the Eighth has escalated and both sides seem to be preparing for a referendum in the near future.
Like all of you, I have listened to the arguments. It is a topic that evokes strong feelings and on social media it can be particularly brutal.
Recently, I decided to tweet my own personal story and opinion.
I am a mother who watched my daughter die at six days old from a fatal condition. It is an experience that changed my life.
Aishling was my third daughter. I had heard about these kinds of tragedies. I had read about them. Like most people, I naively assumed that this kind of thing would never come to my door. I had always felt sympathy for people who had to endure such ordeals. I had rightly assumed that I couldn’t imagine how it felt. They had my condolences and thoughts for a brief moment and then I got on with my life.
I had the luxury then of basing my opinions on what I thought was a rational, reasonable examination of the facts. I felt that I had listened to both sides of the argument and had reached an educated conclusion.
Six years ago, I believed that the best option was to carry a baby to term and to spend precious time bonding with and loving that baby.
When I look at photos of myself from those years, I don’t really recognise the woman looking back at me. I have grieved for that woman. I have wished that I was still that woman, but I am not.
My daughter’s condition was not diagnosed during my pregnancy.
I went through nine months believing I would have a perfectly healthy baby and imagining how our family life was going to change.
Aishling was just over 24 hours old when she became ill. She was two days old when she was transferred from Cork to Crumlin. We could not go in the ambulance with her. We followed them in the car on what felt like the longest journey we have ever taken. To this day I still hate sitting in a car driving behind an ambulance.
Aishling did not have a properly developed, working heart. When we got to Crumlin we hoped they could fix it. The bottom line was, they couldn’t. We faced making the most difficult decision, whether to allow her to go through palliative procedures in an attempt to prolong her life, or withdraw her care.
I thought about my beautiful baby lying in intensive care and the suffering I already witnessed her go through. We had to ask ourselves extremely difficult questions, such as what is a reasonable quality of life, how much pain and how many procedures were we willing to put her through, what were we willing to put our other two children through and what were we as individuals and parents able to endure.
We made the decision to withdraw Aishling’s care. I held her, loved her, memorised everything about her.
I watched her die. All I could hope for was that being in my arms meant she felt safe and that morphine was enough to stop her feeling any pain.
That experience changed me as a person, as a wife, as a mother. The grief stripped me to the bone and it has taken a lot of time to rebuild myself. I never faced making a decision during my pregnancy about what path to take, but because of my experience I have thought about it. What I have learned is that there is no right answer. This is not a black and white situation and should not be approached with ‘a one hat fits all’ attitude.
People who decide to travel to terminate their pregnancies should be listened to with respect. I have spoken to people who made that decision. I have spoken to people who wanted to carry their baby to full term. Both speak passionately, their love and grief for their children immeasurable and equal. I discovered that people who terminate do so for the same reasons that I chose to withdraw Aishling’s care.
I ask that in the months ahead people approach this debate with respect. On both sides of this issue there are bereaved parents.
It is not necessary to tell people who share their experience that they are wrong. You don’t have to agree with their choice, but please show some empathy. It is unnecessary to use hurtful and purposefully provocative language in what is already an emotional discussion.
I fear that for some, this debate will become extremely difficult to bear. We need to remember these are real-life situations. We need to acknowledge their grief and their lost babies.
‘We loved him as long as we could’
Our son only ever knew love. He was diagnosed with a condition called anencephaly which meant he would not survive for long after birth. It was not a situation I had ever prepared myself for. Who would? My life took a painful but unexpectedly love-filled path which takes my breath away to this day.
On the day we received the awful news of his condition, one reality was clear — our time was short. We would have a small window in which to give him all the love we had for him.
There and then we named him John Paul, after his Dad. This was my husband’s suggestion, we were welcoming this child together. I was not alone.
The next couple of days were a blur of broken sleep with nightmares, waking up and finding the nightmare was reality, the routine of looking after my other kids and the job of telling them the tragic news about their little brother.
Slowly, we began to hope. And make plans. Plans to celebrate his short life — plans to give him all we could. I began to live in the moment, enjoying each kick, each turn, each hiccup. A hug from one of my children to their baby brother was never rushed for the sake of peeling carrots or finishing homework. Each moment was filled with meaning.
The love, care and support of our wider family and friends overwhelmed us. People thought of the most beautiful things to do for us and for John Paul.
One example was my mother-in-law who, along with all her grandchildren, knitted a tiny blue cardigan, which he would wear when he was born. My son was going to be clothed in love, even if just for a short time and not just our love but the love of many people around him.
The obstetrician invited our other children to our 32-week scan — this was an occasion where he facilitated them meeting their brother for the first and possibly only time. Nothing was too much trouble, whatever they wanted to see he found for them — even proof that he was a boy.
John Paul was born at 36 weeks. It was late at night and all was quiet. He lived for 17 minutes and passed away peacefully when my husband cut the cord. All our hopes for him had been fulfilled. We had met him, held him, told him we loved him and baptised him. Now we could let him go.
Seventeen minutes might seem like a very short time, but it is etched in our hearts forever.
It has been such a gift to look back during our time of suffering and loss and remember those precious times together.
Our one comfort has been knowing that we loved him for as long as we could and then let him go when the time came. This is what all parents want to do for their children — to be there for them when they’re needed and to let them move on to greater things when the time is right. With John Paul, it all just happened in a much shorter space of time.
Babies like John Paul, with terminal illnesses, are being used as a strong argument today, to repeal the Eighth Amendment.
I believe that Irish people have deep compassion and a desire to be there for one another. When we hear of a mum like me carrying a terminally ill baby we want to take away the pain. It is only natural. But no one can undo a life and no one can be protected from grief by initiating death.
If I had travelled to England that time, my baby would have had an injection into his heart and I would have had to deliver him dead. When I think of this and then of our experience with John Paul — the precious time we had, the profound experience of family — I find it heartbreaking that any woman wouldn’t be offered the kind of care we received — perinatal hospice care. This is the best possible care for a mum and her baby in my opinion.
I am free to remember and celebrate John Paul’s life, instead of trying to forget and move on. I am so grateful for this and I would wish it for any mum facing these awful circumstances.
Cliona Johnson is a spokeswoman with the group ‘One Day More’, a support group for parents who receive a poor prenatal prognosis for their child.