Gerry and I were just over a year married when we discovered that I was pregnant. We had not been actively trying for a baby, we had not been guarding against, and if I am totally honest, I was more than a little disappointed each month. But finally I got the second blue line.
Then at seven weeks, I got a scare. I was crying all the way into the hospital for fear that we had lost our precious baby, but a scan confirmed that the news was good – there was a good strong heartbeat – nothing to worry about. The following three months or so were pretty uneventful – just what everyone wants in a pregnancy. I was well. My bump was shaping up nicely, and I was starting to feel fluttery movements.
Finally, the day of the big scan arrived. The ultrasonographer pointed out the heart, beating away strongly, the spine, distinct and intact. She pointed out the hands and feet, and printed little scan pictures for us. I later realised that she was giving us our last moments of normality with our baby. She then went on to say, that she wasn’t seeing everything that she should, and that bone shows up white on the ultrasound, and she wasn’t seeing it where she should around the head, that that was a concern, and that she would need to get a consultant. While we waited for her to come back with the consultant, my mind went into overdrive – would they be able to do an operation in utero? Could a special helmet be made? How were they going to fix this? Meanwhile the anxiety was building.
So the consultant arrived and scanned me again. The diagnosis was anencephaly – a condition in which the neural tube fails to close in early pregnancy, and which was (those devastating three words) incompatible with life. He took us to a small room, most notable for the box of tissues on a small side table. He told us that in this jurisdiction, all that they could do was to continue to care for us through the remainder of the pregnancy. Our disbelief must have shown through the tears, but the phrase that stuck with us in the aftermath was “in this jurisdiction.”
Poor Gerry – when we got home, he made the phone calls to our parents – I was too distraught to even speak. All four arrived shortly afterwards – all four were also devastated. All they could do was offer their support, but ultimately the decision as to what to do rested with us – well, with me really. We saw various people over the following days – the hospital midwife who scanned us, my obstetrician, my GP, and even a psychiatrist, who, reading between the lines, pointed us in the direction of a particular hospital outside this jurisdiction.
We managed to get an appointment there for a second opinion and amniocentesis. The diagnosis of anencephaly was confirmed, and in fact we were told that it was a particularly severe case. To this I replied that I wasn’t being smart, but wasn’t fatal just about as severe as you can get? She went on to explain that yes, in all cases anencephaly is fatal, but that in some cases there is a relatively small hole at the top of the head, but in our case, it was as if there was a line from the eyebrows to the back of the neck above which there was no bone. This meant that the delicate brain was exposed to the corrosive effects of the amniotic fluid. Speaking of amniotic fluid, that which was drawn off for amniocentesis was pink in colour, indicating a fairly high concentration of blood. We were not talking about a baby who would be severely disabled, or have a poor quality of life. This was a baby that had no prospect of life whatsoever.
Taking all of this into consideration, we made an appointment for another week later to come back for an induction. I was admitted to a room which I believe is kept for tragic cases like ours, and I cannot overstate the dignity and respect with which we were treated. Gerry and my mum had gone out for something to eat when the medication arrived with my lunch. I had to take two tablets to start the labour. Contrary to other reports I have read, there was no injection to the baby’s heart. The severity of his condition and the fact that I was only at twenty two weeks gestation meant that there was no prospect whatsoever of him being born alive. Sitting there alone, I pushed the two tablets around the tray, knowing that once I took them, there was no going back. It was like being presented with two buckets of sh!t and being told to take your pick. Even though I knew it was the right decision for us as a family, for all of us, it was still heart-wrenching.
Our son was born the next day. One of the midwives took him to another room to wash and dress him before bringing him back to us in a little Moses basket. He was small – only 9oz – and due to his prematurity was considerably darker than a full-term newborn. The hospital chaplain arrived a little later and performed a little naming ceremony and said a few prayers for us and our son. We got a few photos of him, and the midwife gave us a little booklet with his footprints in. She couldn’t take handprints because his hands were closed, and she didn’t want to damage them. She said to us that no matter what, we were a mummy and daddy now.
I can’t speak highly enough of the care we received. They gave us as long as we wanted with our son and were in no rush to get us out. However, the time eventually came when we had to leave him behind. That was the worst part – that we couldn’t bring him back with us and arrange our own funeral or ceremony or whatever we wanted to do. The hospital kindly arranged for a cremation, but we could not be informed exactly when, so it took place without us being there. Joshua’s ashes were sent back to us by courier.
This account is far longer than I intended when I started writing. The hospital that we went to asked us not to identify them – their observation was that there are enough nutters out there with guns without them raising their heads above the parapet. We have respected their wishes in this regard, even though it was eleven years ago. Nothing has changed here, and there are still nutters with guns everywhere!
I have never been able to understand why there is a difference between being induced at forty weeks and being induced at twenty two weeks where viability is not possible either way. Cases like ours were highlighted to Bertie and Dermot Ahearn by the masters of the three Dublin maternity hospitals ten years ago, along with recommendations that provisions be made for such circumstances. People like me spoke out, (Channel 4 News did a piece about us, and Emily O’Reilly devoted a full page in the Sunday Times to our story) and the then government maintained that they couldn’t comment on individual cases, in spite of the fact that diagnoses of fatal foetal anomaly are, sadly, not uncommon.