As I sit down to write this, my daughter’s ashes sit in a small wooden box on the shelf across the room. A plaque on top of her little box states: Aoife Burke, died 2 December 2011, Rest in Peace.
The box came by courier last week, from England. I had spent the week anxiously awaiting its arrival. The last month has been the most horrific and heartbreaking of myself and my husband’s lives. Up until the 11th of November, things were very different. We were over the moon, so happy to be expecting our firstborn child. Our time was spent in delighted anticipation, planning and talking of baby names, thinking of all the changes having a child would bring to our lives.
When we went in on the 11th for a 21-week scan, we were a little nervous to be reassured that all was well, but mostly just looking forward to finding out if we were having a healthy little girl or boy. In the scan room, we watched our baby on the screen doing flips, turning her head from side to side, kicking her little legs. She seemed quite an active little one. I was smiling, filled with swells of love and anticipation, my husband holding my hand and looking so proud and happy. Then the sonographer grew quiet.
When she spoke, at last, her words literally sent my world crashing down around me. She said she was concerned with what she saw on the screen. That the baby’s heart didn’t seem to be formed properly. She spoke of congenital heart defects and that we would need to see the Consultant who would do a full scan. I still remember her saying, ‘I’m very worried about your baby.’ I just sat and cried and cried.
Eventually, we were taken into another room and a midwife came in to say that the Consultant would see us on Monday and we would know more then. We spent the weekend in fear but also trying to harbour hope that either the sonographer was wrong in what she saw, or that there were maybe some problems but that these could be dealt with by surgery. When we returned on Monday, the Consultant and numerous doctors and nurses were in the room with us, which fed our fears that something was really wrong.
They did a detailed scan and called out their findings in medical terminology that we tried desperately to decipher. The doctor told us it was a little girl. I broke down and cried as I lay there watching my baby on the screen and feeling her future possibly slipping away. The doctor said they did find a problem with the heart and other indications the body was not functioning properly. They were concerned these may be indicting a bigger overall problem. She advised we do an amnio test to see if there was any evidence of a chromosomal condition. We agreed, and this was done.
We were then told we would have to wait two-and-half to three weeks for the results, but that there was a clinic in the UK where for €250 they could test for the three most common conditions within three days. We opted for the faster test, and even that wait of another few days was agony. We wanted and needed to hold on to hope for our little baby. After the testing, they brought us into another room to discuss the outcome and the next steps. I remember feeling a sense of unreality like I almost believed I could just wish all this away, make it not be happening.
The doctor told us they would make an appointment for the cardiologist for next week, but that seeing them would depend on the test results for the amnio. She said that if the baby’s condition was not compatible with life, we could not see the cardiologist. That was when my heart really began to break into pieces. As an expectant mother, every ounce of my being, all my impulses are to protect my baby, to make her safe. To have someone suggesting that maybe the baby was not going to make it; I simply could not even consider it. We left the scan room, stumbling teary-eyed through the waiting room full of happily pregnant women, out onto the street where I broke into uncontrollable sobs as we walked away from the maternity hospital.
Somehow we got through those few days waiting for the results, I think by convincing ourselves there was hope and that we would be able to see the cardiologist and see what could be done. The phone call from the midwife that afternoon brought all hope crashing down. The test came back as positive for Edwards Syndrome. She told us that the baby would either not survive the rest of the pregnancy, or she would be born with severe health problems and likely die shortly after birth. I felt I had been punched in the gut when I heard my husband on the phone repeating the midwife’s words. Again that feeling that this was a nightmare and I would eventually wake and none of it would be true.
We were left to decide what we wanted to do with the news. My options were to continue with the pregnancy, the midwife said the baby could likely die before she reaches full term. Or I could carry her for the full term, but that based on the diagnosis she would not survive for long after birth. The heart condition alone was very serious. She said that if we decided to ‘travel’ we should speak to the Irish Family Planning Association who could advise us on options. I was shocked to learn that even with a fatal diagnosis you could not end a pregnancy in Ireland.
After much agonising, my husband and I decided that we could not continue with the pregnancy. If we continued, I would face the next three-and-half months wondering every day if my baby was still alive or had died inside me. Knowing that, even if she made it to delivery, bringing her into the world was no kindness. At least in my womb she was protected and supported by my body; her own would never develop enough to survive on its own. It is not a ‘decision’ in a normal sense, as none of the options available to us were ones I wanted to avail of. What I wanted was magic powers to make my baby ok; to change the moment in conception when it went wrong. Everything had felt so right with the pregnancy, every bone in my body had told me my baby was healthy and would grow strong, that I felt cheated on so many levels. I felt guilty for bringing her poor soul into the world in a vessel so fundamentally flawed.
On top of it all, I could not believe we would have to travel to England, like criminals, to end the pregnancy. I went to see a counsellor in the IFPA. She was very supportive and non-directional. We discussed all the options. I cried and cried, but I came out of the session with more certainty of the decision that we would ‘travel.’ The hospital faxed my records to the family planning centre, and they made the referral to the hospital for me. The hospital staff in Dublin could not be seen to be referring me to do something against their law.
I was heartbroken and increasingly incensed by the whole system. The staff in the hospital in Dublin see these kinds of situations all the time. Having to tell a woman her baby is not going to survive, and then telling her they can do nothing to induce and end the pregnancy early. That she must go through the additional pain and heartbreak of carrying on and possibly giving birth, only to watch her baby die.
We waited again to hear from the hospital in England. They have a foetal abnormality unit who dealt specifically with these types of diagnosis. The Consultant in the hospital had to agree that the baby would not survive or they would not carry out the procedure. We heard from them after a few days, and they scheduled us in for the next week. We bought plane tickets and booked a hotel, we planned for how to pay the fee, just under €2,000.
It felt like everything was adding insult to injury. Not only did we have to make this horrible decision about what to do in the case of a fatal condition, but we also had to leave the country like criminals; speak in euphemisms to hospital staff in Ireland; pay thousands to end a pregnancy, while all the while my heart was breaking at having to say goodbye to my darling baby girl.
We spent nearly a week in Liverpool. The hospital staff were excellent, caring, compassionate and reassuring about the decision we had reached; that it was the kindest thing to do for our baby girl who was not made for this world. They treated us with dignity and respect and affirmed to me that I was a loving mother who wanted the best for her baby. You have no idea how much I needed that, coming from Ireland where the law of the land made me feel a monster for making what I felt to be the most humane choice for my baby.
The staff told us they regularly had women over from Ireland who were faced with this dilemma. They said that often times the couples chose not to tell anyone of their decision; not family, not friends, not even their doctors. These couples come over in complete secrecy and hold the truth of how the pregnancy ended as a dirty secret in their hearts for fear of judgement.
I hated that I had this anger at the injustice of putting traumatised women and their partners into an even more damaging position by having to make this awful choice outside of the comfort of their own circle of support. We, like many other couples before us and many after us, were adrift in a strange city, wandering unknown streets with thoughts only of our loss, returning to an anonymous hotel room.
I hated that my anger over the Irish system was there alongside my grief and shock. But as I said goodbye to my baby daughter, I vowed I would speak up about our situation. I cannot put into words the extent to which having a baby who would not survive was made much more traumatic by the fact that I could not end the pregnancy in Ireland. I had to fight feelings of judgement by others; go into a strange hospital in an unknown city when I should have been able to put all my focus on grieving for our baby and coming to terms with the diagnosis.
I realise that abortion is and will always be a highly contentious issue. But when your baby is not going to live, how can it be justified that pregnant women must sneak over to England like a criminal to do what they feel is the most humane thing? I did not go to an abortion clinic, I went to a hospital, was seen by specialists, and the procedure would not have been carried out if there was any hope of survival. Words simply cannot express the depths of my hurt and yes, anger that myself and other mothers and fathers have to go through this additional trauma in cases where their baby is not going to survive.
The morning after giving birth to my stillborn child, I found myself with my husband at the airport standing in an endless queue for our flight home. I was crying, weak, bleeding and light-headed, willing myself not to faint for fear they wouldn’t let me on the flight. All I could think of was getting home to my own bed where I could bury my head under the covers and sob my eyes out for the loss of my beautiful baby girl. Instead, I was sitting on a plane willing myself not to totally fall apart; with Ryanair stewardesses trying to sell me scratch cards and the drunken screeches and squeals of a hen party bound for Temple Bar behind us.
When a much-loved and much-wanted baby is not going to survive, please don’t make parents go through this additional pain, stress, strain and shame of ‘travelling,’ which the law currently does.