I’ll start my story with the happy ending. As I write this, my 11 week old baby boy is sleeping peacefully in his moses basket. A wry smile plays on his lips as he dreams sweet baby dreams. I reach into the basket and gently run my hand across his high forehead and in that one action my happy ending is tinged with the sadness of events some twenty one months before.
In late September 2011, I was twenty weeks pregnant with my third child. All was going well. I had been enjoying feeling the baby move and hadn’t been too tired or afflicted by morning sickness. I was a little chuffed with myself as I had always wanted to have three children by the time I was forty and this baby was due two weeks after my fortieth birthday. I was in good form as I made my way into the Rotunda hospital that Thursday afternoon for my anomaly scan. I had my sister with me and we were enjoying the leisurely journey into town, stopping for a coffee on the way. I had always had a “thing” about having someone with me when I went for a scan. Nothing I could have articulated clearly at the time, just a sense that one shouldn’t go for these things alone. On that particular day my husband couldn’t get away from work and my mum was away on holidays so my sister was “it”.
We arrived at the hospital and made our way to the scanning waiting area and were quickly brought into the room by the sonographer. She soon found the baby’s heart beat but very shortly after that, uttered the words that I have replayed in my mind on many occasions since. She simply said “ I’m a little concerned – I can’t see the baby’s skull” I am a doctor so after a beat or two, the reality of what she meant started to dawn on me and I said to her “ do you mean like anencephaly?” She was relieved that she did not need to explain what she had just found – “you’ve heard of it?” she said. I revealed my medical background leaving my poor non medic sister wondering what in the name of God we were on about.
As many will know by now, thanks to recent media coverage of the topic, anencephaly is a condition where the baby’s brain and skull do not form leaving a great big nothing above eyebrow level. My baby had a heart that was beating but little or no brain tissue with an open ended “half” skull which meant one thing. This child would not live after birth. My baby was going to die. Of course I knew this was the case when I was told the news but the reality did not sink in immediately. The sonographer called the consultant who came over to see me straight away and arrange to meet myself and my husband to discuss the next step. He offered me an appointment the next morning to which I replied – “I can’t come then – I have to go to work” The things we think we have to do. So we arranged to meet early the following week.
It took the walk from the Rotunda back across the city to Grafton street for the tears to start. Flashes of realisation that there would be no baby at the end of this pregnancy: there would only be loss and grief. I had to start letting people know – my husband; my mum who had been texting from Italy to know how the scan went; my boss to let her know that I probably wasn’t going to be able to go to work the next day after all. What was I to tell my four year old son who was eagerly awaiting his new brother or sister? It’s true what they say about worry and how useless it is. It’s the out of the blue unexpected things that are the real troubles in life.
We stumbled through that weekend. I actually did work the next morning. I somehow managed to keep it together for a few hours. I wondered about options. I already felt that I would not be able to continue with the pregnancy. Those moments of joy feeling the baby move were fast turning to feelings of resentment. It was cruel to let me feel the movement of my baby who would never move outside my body. I wished it would stop. I wasn’t enjoying it anymore.
We met the consultant again a few days later who explained our options. We could continue with the pregnancy – it would be a long twenty weeks but I knew by then this was not for me. Not if I wanted to remain sane. How would I survive the frequent questions of “Oh when is the baby due?” How do you reply? Do you play along to spare them the embarrassment and then pick yourself up off the floor after every such encounter or do you hit them with the truth and tell them the baby is going to die and pick them up off the floor. It was too cruel to continue. It wasn’t as if there was a glimmer of hope. There was the complete absence of hope. There was only the certainty of a fatal outcome. So, the consultant explained that we would have to travel to the UK if we wished to have a termination and he sent us to meet the foetal medicine nurse to talk us through what we needed to do next.
Her name was Jane but she said they called her tea and tissues because that’s what she provided and she was a beacon of light in this tale of doom. She was amazing. So kind, so supportive and understanding and she did indeed give us tea and tissues but she mostly gave us the support we needed in the uncharted waters we were entering. At that time there was a convoluted “referral” process whereby the hospital had to send us to the Irish Family Planning Association (IFPA) to get the referral to Liverpool Women’s Hospital who only do terminations for fatal foetal abnormalities. So after we spoke to Jane, she spoke to IFPA who phoned us back with an appointment and by 4pm that afternoon, we had been contacted by Liverpool Women’s who offered us an appointment two days later. The nurse who phoned from Liverpool had obviously had this conversation with many Irish women – she suggested we come straight to the hospital from the airport and was able to tell me the arrival time of the flight from Dublin to Liverpool.
We had less than 48 hours to book flights and accommodation and arrange family to mind our two year old and four year old. Fortunately, we had the financial resources to finance all of this because we were being treated as private patients in Liverpool. The termination of the pregnancy was going to cost us the guts of three thousand euro.
And so, we took the morning flight to Liverpool on a bright and unseasonally warm September morning. The flight was full of happy travellers: girls on a hen weekend; couples heading on a romantic long weekend away and me and my husband hoping that no one would ask why we were going to Liverpool.
On our arrival, we managed to meet the chattiest taxi driver in Liverpool. I willed him to stop chatting and wished my husband would stop engaging in conversation with him because I could hear the question coming and I was rapidly searching for a response to give him. Amazingly he didn’t seem to jump to what I felt was the obvious reason why we were headed to the women’s hospital. He asked if we worked in the hospital. I said no, that we were going to visit someone.
When we got to the hospital’s foetal medicine unit we were taken in by the kindest most compassionate group of people I have met for a long time. They took us to a quiet area and explained what would happen. Firstly they arranged a repeat scan to confirm the diagnosis and see if there were any other abnormalities apart from the anencephaly. I was glad of this because over the previous week I did wonder if there was any chance that the scan was wrong and that everything was actually ok. The scan confirmed the diagnosis. I was then given tablets to take to start the process but it would take 48 hours for it to become effective. So after we discussed surreal topics such as what we wanted to do with our baby’s remains afterwards and if we were happy to give our Irish address, we were free to leave the hospital and go to our hotel.
It was that gloriously warm and sunny weekend at the end of September of 2011. It was twenty-five degrees with glorious sunshine and we had 48 hours to kill.
I had never been to Liverpool before and had an idea that it was a grey industrial and dreary city but it turned out to be a beautiful and friendly city that held us in its bosom that weekend. We were staying in the beautifully restored docklands area and spent the weekend strolling around the city streets browsing and shopping and dining out like any other normal couple away for the weekend. For most of the time, the reason for our trip could be suppressed until we were lying in bed at night. That’s when the tears came.
And so, on 1st October, we returned to the hospital where I was admitted to the ward and the induction process began. I was given tablets to take every few hours, to induce labour. That’s all it was – the early induction of the delivery of a baby who would not survive no matter when delivery occured. As the midwife said, we were just bringing forward the inevitable.
It took about fourteen hours but that night our baby boy was delivered and as expected he did not live. He weighed less that a quarter of a kilo and from the eyebrows down, he was perfect. We held him and named him TJ and cried together for the death of our son.
The midwife placed him in a crib for us and dressed him in some of the collection of clothes they had for these tiny babies. There was a small room just off the delivery room where they left the crib for us so that we could go and be with him if we wished. On our request, the priest came to see him. He blessed him for us and was so kind and compassionate. He told us that the church looked on these babies differently and not to feel that we had done the wrong thing or to let our decision keep us away from church or communion. I don’t know if this is the case but I was so appreciative of his kind words at the time.
The staff took photos of TJ for us to have as well as hand and foot prints which they put in a booklet – a lovely keepsake to mark the existence of our little mite.
The next day we returned to the real world; back to the airport and the hustle and bustle of the return flight to Dublin.
I took some time off work. It took several weeks for the sadness to lift. I wanted the world to stop and acknowledge what had happened; what we’d been through. But it didn’t. Life carried on around us. I stumbled through day to day tasks. I didn’t want to make small talk with shop assistants. I cried and shouted out to a God to please tell me why this had happened – what was the point of going through this agony. A week or so later, the DHL man arrived at the door with a package from Liverpool – my babies cremated ashes. I often wonder did the delivery man know what was in the parcel.
Time passed and gradually things improved. One of the first things that happened to me after we got the diagnosis was a sudden sense of clarity. Clarity of things I needed to do and what was important. Tasks I had put off for months I was suddenly able to complete; my tax return took a couple of evenings to do instead of the two to three weeks it would normally take me. I joined weight watchers and started a new lifestyle regimen of healthy eating and exercise. I started running and it changed my life.
I decided this had happened to me for a reason. This was my wake up call to improve my lifestyle and get into shape. I lost over three stone within a year and became fitter than I had ever been, running regularly and taking part in several 5 and 10 km races. I also felt that if I could help to make people aware of what women in my position were going through that TJ’s death would not be in vain. I got my opportunity when I heard Arlette Lyons speak on the Ray Darcy show and shortly afterwards I also spoke to Ray.
Slowly over time, the sadness dissipated. We got through the significant dates: My fortieth birthday when my godmother gave me two rose bushes as a present; the due date a few weeks later, when we planted the rose bushes with TJs ashes in the soil and the first anniversary of his birth/death.
Now, though I still think about TJ most days, I can think and talk about it without being overcome by the sadness of it all.
In September 2012 I found out I was pregnant and though it was at times an anxious pregnancy, we welcomed our beautiful happy healthy baby boy into the world in May of this year.
Finally my family is complete and though I didn’t quite make my deadline of forty, perhaps this was for a reason too. If TJ hadn’t died, we almost certainly wouldn’t have had this baby at this time. Heartbreaking as our journey has been, perhaps things do happen for a reason….
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