INCOMPATIBLE WITH LIFE; a term I first heard on the 4th of February 2013. That was the day I found out that my child, a child I hadn’t even met yet, was going to die.
We had two girls and a boy. Our youngest daughter would soon be starting primary school so we decided it was a perfect time to finish our family and start trying for number four. I wanted another little boy. To me, two boys and two girls was a perfect little family. I came off my contraceptive and started taking my prenatal pills. Two months later I was pregnant. I was so happy. I contacted the doctor straightaway who referred me on for our dating scan, which we had at 10 weeks.
This scan was at Monaghan Hospital and to our surprise we were called straight in. The female technician carrying out the scan was a friendly lady, very chatty, ‘there’s the feet, that’s its wee hand , there’s the heart beat’ etc. It was a very normal scan and, although I kind of knew, I was still a bit gutted when she said I was too early in my pregnancy to find out what gender we were having, and that we would have to wait for a later scan.
Thinking back, the technician had trouble dating my pregnancy based on the size of the foetus. At the time we thought nothing off it and fobbed it off to outdated equipment, but I do wonder if she knew something at the time but didn’t have the heart to say.
The first trimester was probably the easiest I’ve had with any of the kids, I had no morning sickness and wasn’t as tired as I was with the others. This being my last pregnancy I wanted to enjoy it and felt lucky that I was getting away so easily.
Twelve weeks came about fast enough and we decided it was safe enough now to start telling family and friends the good news. Taking a modern approach I uploaded a picture of the scan to Facebook with the caption “Newest member to the family”. Everyone seemed happy for me and joked about sleepless night and nappies, it was nice.
Around this time I was given the date for my appointment to meet my consultant.
We had been booked in for the 4th of February 2013 which put me just over the 17 week mark in my pregnancy, I remember being really excited for this appointment – this time we would get better pictures of the baby and finally find out what we were having. It was like the countdown to Christmas and the next few weeks went slowly.
The 4th of February finally arrived and my partner and I headed off for our appointment and got checked in at the front desk. Eventually my name was called by our consultant who met us with a handshake and asked us to follow him into his office. After a quick run over my chart and a few pleasantries he asked me to lie down on the bed so that he could administer the scan.
As I lay there I watched the baby stretch out forming an arch with his spine I could clearly see every rib. I could count his fingers and see his heart beating. It was perfect and brought a huge smile to my face. ‘Can you tell us if its a a boy or a girl?’ I asked to which he replied ‘I can’t tell’ as he continued to focus on the now blurry images on screen. ‘Bloody look harder!’ I thought to myself.
I had noticed the consultant became quieter and more serious at the time, but I just assumed his ‘serious doctor face’ was just him going through whatever checklist they have when administering a scan. The baby was jumping around, and it amused me to think he was making the doctor work for his money. ‘Go on baby!’ I thought.
The consultant finished up the scan and handed me a roll of tissue to clean up the gel he uses for the scan and asked us to join him back at his desk. Having had kids before, I felt like a pro at this and had expected to be told everything was fine and that we’d meet again in eight weeks.
Sitting down I waited for the usual speech ‘Eight weeks, book in, NEXT!’ But he was quiet for a moment.
‘Have you ever heard of anencephaly?’ he asked. ‘I believe your baby has a condition called anencephaly it’s a neural tube defect that affects the top of the skull’. He explained that the baby’s skull hadn’t formed above his eyebrows and that the condition was fatal – no cure, no chance of living, incompatible with life.
Finding this out nearly halfway through my pregnancy was a surprise. As far as I was concerned, once you reached 12 weeks with no problems it was happy sailing. My first thought was ‘I can’t do this, I want to end the pregnancy, get it out off me’. I went into a panic. My baby was going to die and there was nothing I could do to stop it. It felt so unfair. He went on to explain that one in every 100,00 babies born have this condition, that the cause of the condition was unknown, but that low levels of folic acid can be a contributing factor.
We asked what our options were and were told in Ireland we didn’t have any, and that under current Irish law the pregnancy had to go to term but suggested going to England if we wanted a different outcome.
He told use he would make an appointment for us in the Rotunda Hospital in Dublin to confirm his diagnosis as it is a specialist hospital and would have had cases like this in the past. ‘Wait by the phone’ he said ‘you will get a phone call by the end of the day’. Then sent us on our way.
We walked out of of his office in shock, we had never heard of this condition and had no idea what we were supposed to do. We got to the car and I burst into tears. We talked and hugged for a while then drove home and were met by my partner’s mother who had been looking after the kids for us.
‘So how did it go?’ she asked with a smile on her face, ‘What are you having?’ I broke down again and was too upset to explain what was wrong . My partner told her the baby was going to die, that there was something wrong with the baby’s head but we weren’t sure what it was, she asked lots of questions which we couldn’t answer because we couldn’t remember the name of the condition so we tried searching the internet for information based on how the consultant described it.
There was very little information online but we gathered up all we could in the hope of finding someone somewhere that survived this condition, a new medical treatment –anything that could save our baby’s life. But we found nothing, our baby was going to die and we were left with a choice carry to term and bury the baby, or end the pregnancy early and bury the baby.
At the time I was so angry with the country, how dare they make me go through with a pregnancy knowing my child was going to die? It felt wrong that they were making my choice for me. I had to go through with this, not them, and if I decided I wasn’t strong enough to carry to term, I would have had to leave this country to do what was right for me.
We had a few weeks left to figure out what we wanted to do so decided against rushing into a decision we could possibly regret later.
We waited for a phone call with a time for our follow-up appointment in the Rotunda Hospital but it never came. Unable to get any information, I rang the hospital who hadn’t been contacted regarding my case. They told me to leave it with them and they sorted everything out for me and later rang me with my appointment date.
We arrived in Dublin early and made our way to the Rotunda Hospital, after finding the right department we were checked in and asked to take a seat, a midwife took us to a separate room for a chat and to answer any questions we might have before being seen by the specialist. Another, more detailed, scan was administered and it was confirmed that my baby had a problem with the top of its head and there was nothing that could be done. Although I had already been told this, I had prayed my consultant had been wrong.
We also found out we were having a boy. It felt like a sick joke, I was getting the boy I wanted but once he was born I would have to bury him.
After seeing him on the scan we decided to carry to term and started to prepare for the eventual outcome. We decided that, if possible, we would like to donate our baby’s organs but we were told this wasn’t possible. We didn’t want to accept this answer. Parents in other countries were donating organs, so why not this country? On our next visit with our consultant we asked him about the possibility of donating organs. He didn’t have an answer either but loved the idea and said he would look into it for us. A short time later we were informed that Beaumount Hospital would accept a donation* from our son and were asked to come to Cavan Hospital to do the paperwork and discuss everything to do with the procedure.
[*Ed. note: TheJournal.ie contacted the HSE to clarify options for families about organ donation. It confirmed that organ donation by babies with fatal foetal abnormalities, such as anencephaly, is not usual clinical practice. This case was exceptional. The author confirmed that the exception was made following a request by her family.]
The weeks and months to follow were very difficult.
Medically speaking, the pregnancy went as normally as any other. I would visit my GP every four weeks and consultant every eight weeks. Emotionally, though, it was very difficult, I was carrying a baby to term, feeling him move inside me, bonding and falling in love with him, something so precious and important to me … yet knowing I wouldn’t get to keep him. I felt as if I was being tortured.
I should have been running around the baby section picking out stuff for his arrival – instead, I was picking out his coffin, organising whether we wanted to bury him or cremate him, and what type of flowers to choose. Instead of picking his coming home outfit, I was picking his burial outfit.
Crying in my partner’s arms became my normal way of falling asleep which would happen multiple times every night. When I woke up for those first 10 seconds before my brain fully switched on and I remembered what was happening I felt normal then suddenly realising what was happening and I’d break down again. I felt a part of myself was dying and I couldn’t fix it.
Feeling him move was a love/hate for me. Every kick, turn or flutter broke my heart and was a constant reminder of what I was going to lose, but every time he was quiet I feared that something had happened to him and that he had died early which would put me in a state of panic until he woke up and started move again.
We told very few people outside our close family and friends, we didn’t know what to say to anyone else. ‘Oh my, you’re getting so big , you must be really excited’ was a common conversation opener. I’d nod and agree and change the subject as fast as I could. Answering ‘No, I’m not excited, my baby is going to die’ didn’t seem the right approach and its not really a subject you can use to follow up the usual ‘Fine weather were having, isn’t it?’
My due date came and went with no sign of the baby wanting out. The weather had got very hot and I was huge and felt really uncomfortable and just wanted to meet my baby. Our consultant wanted to give me another week to see if I would go into labour on my own. The goal at this point was birthing the baby alive and he felt the less interference from him the better it would be for the child.
One week later there was still no sign of the baby so we headed off to the hospital to be induced. When we arrived at Cavan hospital we were given a private room, the hospital felt we would be more comfortable away from the other pregnant women and their babies and they were right, I dreaded having to see other mothers with their babies. It was another reminder of what I was losing.
I had my other kids naturally and imagined that an induction worked similarly – that I would be induced, have the baby, and be home the next day. But each day came and went and still no sign of the baby, to the surprise of everyone. It turned out with the baby missing the top of his skull the necessary pressure pushing down that was required to start labour wasn’t there.
After eight days of being given the induction gel I was far enough along for them to break my waters. Although we were well-schooled at this stage about the condition, I was scared. What if he wasn’t born alive? If he was born alive how long would he live? What if I didn’t love him? There was a lot of ‘what ifs’ that day.
I arrived in the labour ward at 2.50pm. Once my waters were broken I was hooked up to a drip to get my contractions started, which came on pretty fast. I prayed my son wouldn’t die during labour and prayed I got to meet him before he passed, even if just for a second. The labour was extremely hard every time I pushed felt like I was getting nowhere. I was exhausted. I don’t know how I did it.
At 8.46pm on the 31st of July 2013 he was finally born, he was motionless as our midwife started to work on him. ‘I knew he wasn’t going to make it, I knew it’ I kept saying. After what felt like forever his chest expanded, filling with air, and my partner said to me, ‘Rylan’s alive’. I was overcome with so much emotion my beautiful wee fighter the fact that he would later die was of no concern, at that moment my son was alive and for the first time in months I was happy.
I was wheeled back to my room were we were left to be alone with Rylan, we put him on the bed and lay down beside him. I was fixated on his chest as it filled with air going up and down I thanked him for being a wee fighter and giving me a chance to hold him. We lay there for hours just holding him, his skin was so soft and warm apart from his condition he was perfect in every other way.
We started to believe he would live long enough for us to take him home and started working out the details but found out very soon that this wouldn’t happen. Around 2am Rylan threw his arms into the air and let out a squeal; he was having is first seizure. We panicked – nothing we had read or were told prepared us for this. When we asked our consultant questions about what to expect when he was dying, he would shrug and say he didn’t know, that had he never experienced an anencephaly condition before and it was new territory to him.
Anyway we panicked and called for the midwife, but by the time she had arrived the seizure was over. She checked him over – heart was good, he was breathing – but we knew that was the start of the end. We knew there would be more seizures and eventually one of them was going to kill our baby. He had a few more seizures after that, and with each one his breathing became more shallow. Six times he stopped breathing for what seemed like forever and each time we thought that was it, he would come back to us taking a massive gasp of air then breathing slowly to the next time he stopped.
I kissed him on the cheek and told him I loved him and that it was OK he could go now, and shortly afterwards at 6.08am on the 1st of August he passed away peacefully having lived for 9 hours and 23 minutes. I just held him I wasn’t upset at this point, I felt at peace with the notion that if he suffered, it was over now. I just wanted to take him home. I was tired now and just wanted to rest with my baby.
Before that could happen he was going to help someone else, he was going to be an organ donor which amazed me that at 9 hours and 23 minutes old he was about to do something more special for someone else than I ever have done in the 29 years I’ve been on this Earth.
Beaumont Hospital was called and informed of the death and sent a surgical team to Cavan Hospital to carry out organ donation. At around 10am Rylan was taken to theatre to carry out the donation and was returned to us two hours later. When he was given back a paediatrician came to our room to give him a check over so that he could sign the death certificate, followed by an undertaker who was going to embalm Rylan before we took him home, getting him embalmed removed any rigor mortis and gave us more time with him than you would normally have. Heat wasn’t as big of a problem so we could lay up on the couch and cuddle him for the time we had left with him, and I even got to take him to bed with me for a while.
Rylan stayed with us for three days on August Bank holiday we were picked up by the undertaker and with some family and friend headed for Mount Jerome Cemetery in Dublin which was the closest place to us that did cremations. I couldn’t imagine putting Rylan in a cold dark hole in the ground; his place was in our home with his family and cremation let us do that. We had found a teddy bear urn online and I loved the idea that I could take him to bed or cuddle up to him on the couch but they didn’t ship outside the States. So after a bit of work I found someone in the States that I could send money to, they would buy the urn have it delivered to them, then post it to me.
Arriving at Mount Jerome we followed a path that snaked through the graveyard and arrived at a small church on top of the hill. It was beautiful. My partner and I went in first, I carried Rylan in my arms, at the top of the church was a small white coffin – more of a basket, really – that we had picked out months before.
We were told when ready place him in the basket and close the lid, putting that lid on was the hardest thing I’ve ever had to do; once it was on that would be the last time I would see my child. When the lid was closed, family and friends were invited into the church and we had a small non-religious service to say goodbye, at the end of which a curtain closed over to mark the end of the service and Rylan was gone. We went home.
Two days later Rylan’s ashes arrived at my home and I put them into his urn. It wasn’t even close to having him with me but I think having something to hold at the time helped. There hasn’t been a day since that I don’t miss my son and I hope for the short time he was here that he knew how much we loved him.
I was lucky enough to have some great people around me during the worst experiences of my life I’d like to thank my partner especially; he too lost a son but was there for me every step of the way.
I’d also like to thank the staff who were there for me in Cavan: Sinead, Margret, Helen, Britta, Michelle, Arena, Michelle and Brenda.
Michelle Meehan is a mother of three who lives in Monaghan.
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