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Eoin's story begins on the 5th March 2008, the day I found out I was expecting again. We were so delighted. Our little girl Caoimhe was 15 months old and a new brother or sister was going to be the best 2nd birthday present for her! I booked our first scan for the 8th May (13+4) and couldn't keep the good news in as both my sisters were also expecting. We joked how our second child would have to get brand new things as my sisters would still need all their baby stuff that we borrowed for Caoimhe.

On Thursday the 8th May we took half days from work and went in for the scan. There was some confusion as they had no record of my appointment but the girl on admissions was nice and said she'd make sure we got seen. After all the paperwork and waiting around we were called for the ultrasound. Up to that point I was still terrified that maybe I wasn't actually pregnant even though I felt rotten and knew I was. When they put the probe on we could see him straight away. He was moving and kicking and so clear. They measured him crown to rump which agreed with our dates. We were delighted.

There was a student sonographer who was having difficulty measuring the back of his head. The experienced woman took over but also had difficulty. She said it probably wasn't anything to worry about but asked could she do an internal scan just to get the angle she needed. I was worried but obviously agreed. She probed for what felt like ages but said he was lying in a strange position so she couldn't get what she needed. I got upset and she did her best to reassure me that it didn't 'automatically mean there was something wrong'. She made a follow up appointment for 2 weeks later and told me to try not to worry.

On the way home we stopped off for coffee. I burst out crying and said that our baby was missing the back of his head. My husband and I laughed through the tears at how ridiculous that sounded and we put it to the back of our minds and thought about how great the pictures we got of him were. We told more friends and everyone at work. I always said that the first scan didn't go too well but it was probably nothing to worry about and everyone had similar stories about strange positions and the babies were fine.

On Friday the 23rd May (15+5) we had the follow up scan. I took the morning off work and arranged to meet Nev in the hospital. I even said he didn't have to get time off for it if he couldn't; we were so unprepared for what was ahead of us. We were called into a different room and met Dr R.. I thought it was odd to see a doctor. She said that we had been referred to her and I made some comment on how our baby was lying in a funny position. Her face told me that it was much more serious than that. I lay down and she started the scan focusing only on his head. She didn't say anything and I started to cry as I realised something was wrong. She said nothing to reassure me which made my heart sink further. After a few minutes she turned off the scanner and turned to me and said 'I'm sorry, there is no easy way to say this'.

I fell apart. I thought I was going to be sick and started crying hysterically. I tried to calm down and asked what she meant thinking that our poor baby had some terrible disability that would make his life hard. She explained that his skull hadn't formed properly and that his brain was affected. In a case like this she said she could give a very definite diagnosis that he could not survive. She asked if she could scan more to find out more and said I could ask her to stop at any time. I lay there totally numb, unable to look at the screen as she scanned.

I asked what would happen next and she told me he would continue to grow and it was unlikely I would miscarry. I said I could not be pregnant for 40 weeks and have no baby at the end of it. She said she's give me time to think about it before we decided anything. If I didn't continue with the pregnancy I could go to the UK and the hospital could put me in touch with a clinic that would know our situation.

We left the hospital devastated. We both had our cars with us so I had to drive home by myself. I followed Neville and I still don't know how I got back, I was in such a daze. By the time I got home I knew I was going to have our baby, I couldn't decide when his life was to end. We went to a local coffee shop and sat and stared at each other. We collected Caoimhe from crèche and went out to my parent's house. Mum was in town shopping so I texted her to say we had had bad news. She headed home straight away. Neville rang his Mum from the carpark I couldn't even listen to him say it out loud. Out in my Mum's Nev took Caoimhe into the kitchen to play as I sat with my Mum. My younger sister Emma came out too and we just sat there crying. She said she's call out to tell my older sister Kathy.

Even on that day, the worst day of my life, part of it was so normal. Caoimhe still played and demanded attention. We ate, talked and went to bed. I was so shattered I even slept for a while. I woke up at 2am and had to wake Nev to say we had to find out the sex of our baby as soon as possible. He was not going to have a life outside of me so I needed to call him by his name for the time we had with him.

I took the next week off work and tried to come to terms with the diagnosis. I met friends and told them the bad news. My uncle, who is a doctor, gave us the word Anencephaly. I started googling it and made a long list of questions to ask the doctor. I met my doctor, Dr M., for the first time on the Wednesday. She was lovely and said she would see me throughout the whole pregnancy and she'd facilitate me so I wouldn't have to wait in a crowded waiting room with other expectant mothers. My file would be marked to let people know there was something wrong but there would always still be people who made insensitive comments. She told us the official diagnosis was Acrania but that looking up Anencephaly was fine as it would eventually look like that anyway.

On Friday we went back to Dr R. and had another scan, this time focusing on the rest of him – his perfect little feet (measuring 2cm), his back and his hands. We got lovely pictures of him and were told he was a boy! I had convinced myself he was a girl. I had read anencephaly occurs more often in girls and knew girl babies were stronger fighters. I was so surprised and delighted. Our little son. It should have been so perfect. When I had found out initially that I was pregnant we had talked briefly about names and Neville said he liked Eoin. So Eoin he was.

I went back to work on Monday. It was so hard. I felt like I was invisible. Everyone avoided me and I just sat there not knowing what to do. Over the next few weeks things returned to 'normal'. Work was busy and I found I could go the whole day being focused on it but when I'd eventually leave I would just break down and cry all the way home. We had already booked our holiday to Singapore to see Nev's brother and his wife and had decided we would still go. I decided to take early maternity leave and not return to work after our holiday. I wanted to spend what little time we had bonding with Eoin. I worked till the end of June.

We had a nice holiday though towards the end I felt very disconnected from Eoin and just wanted to get home.

We had a scan on the 18th July. I was really looking forward to it. I don't know why but I asked the doctor to confirm our baby's sex and she said she didn't think he was a boy after all. I felt like I was back at square one and all the time I had spent thinking and talking to Eoin was a complete waste. She said I could have amniocentesis to confirm but it carried a risk of early labour. They also wanted me to have the amnio done to do chromosomal testing but if the question mark over his sex hadn't come up I would have waited till much later to do it. I was 23+5, 2 days off 24 weeks which is the official transition here between miscarriage and a still birth if something happened. I couldn't risk it but needed to know so I made an appointment for the following week.

Mum came in with me for the amnio. It was very scary but it all went fine and I was told I'd have the results in 3 weeks. It was a long wait and I felt so removed and distant from Eoin during that time. In the end the results showed he was a boy after all and it was weird but we just picked up where we had left off.

The rest of my pregnancy passed as normal. I ordered tiny hats and small clothes as we had been told he would be small and would be induced at 36 weeks. I made arrangements for us to donate his heart valves. That turned into a bit of a crusade but we eventually found a transplant coordinator who had heard of it and got the hospital to support it.

I grew at a pretty similar rate to when I was expecting Caoimhe and my bump was very similar. I found it hard sometimes to be out and about with my bump but got used to saying he was due in October and yes, I'd have my hands full with two.

His due date was the 9th November but as he was to be induced at 36 weeks the 13th October was the date in my head. I thought it was fitting that October would be his month while November would be Caoimhe's. I thankfully never developed polyhydramniosis and apart from the extra scans (which were for our benefit) it was just like normal. The scans were great, Eoin always seemed to move around lots and we got some cool 3D pics of him. Watching him on the screen it was so hard to believe there was anything wrong with him. I would be so happy and sad after seeing him. Happy he was so strong and healthy and so sad he wasn't going to grow up with us.

He went from being head down to breech to head down, exactly like his sister. He usually measured around 3 weeks behind his date which was normal for a baby with anencephaly.

Turning the calendar over to October was a big moment. I packed the bags for hospital and my husband made the arrangements to take time off work. At 36+3 I went in for an exam and was told that I wasn't ready to be induced. I was fine with that as we had already decided I was happy to go to 37 weeks to give his heart valves an extra week to mature. The other news though was that my doctor was moving to another hospital and could no longer see me. This was a blow as I really liked her and she had given us all the time we needed at every appointment. She had made arrangements for me to transfer to another doctor, Dr S., who I had met before at a scan and who seemed very nice.

I went in at 37+1 to see both doctors together and was very disappointed to hear I was no further along and was to come back weekly for an internal exam. Eventually on the 2nd November (best laid plans out the window!) I was brought in to start the induction. I was 39 weeks and although I was no further along the said they would try. I spent 3 nights in hospital and got 5 prostaglandin gels but they did nothing. I had a lot of back pain and some cramps but nothing like labour pains. It was a tough few days. I had built myself up for this for the last 5 months and was ready to meet and hold our son. I asked about having a c-section but the Master of the hospital said it had no medical benefit for me or my baby and I was displaying an appropriate amount of emotion for someone in my situation! He also said a section could affect my fertility going forward and I had other things to worry about afterwards like planning a funeral that I didn't need to be getting over major surgery too. I felt the Master really hit me where it hurt and it wasn't fair. I couldn't make the decision to go ahead and have one. If something went wrong I would never have been able to live with the guilt.

All the while Caoimhe's 2nd birthday was looming on the 18th November and I did not want my son's anniversary to coincide with her birthday. The Master said a date was just a date and they didn't induce so babies weren't be born at Christmas or on April Fools Day. I didn't think it was the same thing and I had heard of plenty of elective c-sections for reasons a lot less valid. On the 5th November I agreed to take a break and come back a week later for another exam. Over the week I decided I would just go with whatever the doctor said and try and take my feelings about Caoimhe's birthday out of the equation. Once again we packed the bags, said goodbye to our daughter and headed in only to find that Eoin had moved and was now oblique so an induction wasn't possible! We went back in 2 days later, he was back in position but I was still no further on so my doctor said she'd rather not try another induction unless she felt he would arrive in the next 48 hours. It was too close to the 18th and she agreed that was an important date!

We decided to take a few days off and enjoy Caoimhe's birthday and come back in the day afterwards on the 19th November, I'd be 41+3.

I only was a week and a half overdue but as I had always expected Eoin to be born at 36 weeks it felt like I was five weeks overdue. It was a tough few weeks and I was frustrated that instead of trying to enjoy the little time I had left with him it was all about my body and whether I could be induced or not.

We had a small party for Caoimhe on the Sunday with her cousins and family. On the day of her birthday then we took her out to a kid's playmuseum which was good fun. Then on Wednesday we headed into the hospital for the last time. I was examined (again!) and was still no further on. Eoin really wasn't as anxious to meet me as I was him! I had the first gel and settled back into the same room I had been in before. This time the back pain started quicker and when the doctor came to give me the 2nd gel she said things were beginning to change at last. The pain got quite bad that evening but when I went to bed I managed to sleep and when I woke up the next morning I felt ok. I was sure it meant it hadn't worked again and was so disappointed. The doctor came around at 9am and examined me. I was 2-3cm!! I couldn't believe it. She said I would have the baby that day and she'd come back and see how I was getting on at lunchtime. I got up and had a shower. My back was very sore and I started getting some really sharp pains in the shower. I think I was in some sort of denial that things were eventually happening. I rang the nurse around 10:45am to ask for some paracetamol to take the edge off the pain. She took one look at me and said I needed to go to the delivery room.

She got a wheelchair and brought me down despite my insistence I was fine. I got to the room and was standing by the bed giving my details when my waters burst with a gush. I got such a shock. It was 11:10am.

I got on the bed and they examined me and said I was 8-9cm. It was all happening so fast, there was no time for pain relief! They asked if I wanted to push and I did. Eoin was born at 11:26am on 20th November 2008.

He was alive. His breathing was pretty shallow but he was breathing. The chaplain, Sr Margaret, had been there for his birth and she baptised him straight away. The midwife put his hat on and wrapped him in a blanket and gave him to me. She said he was breathing well and he started to pink up, she said we could expect him to be with us for a while. I think it was only then I could relax and take him all in.

He was gorgeous. So much bigger than we expected. He weighed 6lb 4oz. The tiny 5lb clothes I had bought wouldn't go near him! His hands were so chubby and were really like mine. He had his Daddy's lips. We dressed him in a 7.5lb babygro I had borrowed from my sister. He was the full length and breadth of it.

He had a really strong grip. I put my finger in his hand and he held on so tight. We took out the camera and video camera and took lots of pictures. Neville held him as they tidied up the mess!

My Mum and Dad were his first visitors. Nev's Mum and sister Clare were next. The hospital made us a mountain of toast, juice and tea and we just sat around marveling at him.

After an hour or so we were brought back up to our room. The pediatrician came around and examined him. He said he was perfect apart from the anencephaly and he was just very unlucky. Eoin tried to lift his head as he was being examined and he kicked away as the doctor tried unsuccessfully to dress him again. My sisters and brothers-in-law came in to visit and Caoimhe came in to meet her brother. At first she was a little wary but after she got her present of Lego from him and she gave him a card she had made and a little book she began to play with him. She took his little hand in hers and said 'pleased to meet you'. She commented that he was blowing bubbles and every few minutes she'd say 'that's Eoin'. She spent the afternoon with us, in and out of the room, up on the bed and pointing out his hands and feet. At one stage she squeezed his foot a little too hard and he arched his back in response.

We held and cuddled him all day. He had some fluid in his lungs so every now and then he'd cough a little to try and get it up. Afterwards he'd look much better, his colour would come back and he'd fall back asleep. He never really opened his eyes but he snored just like his Daddy when he was asleep! He had a tiny little cry that was hardly audible.

It was a wonderful day. It was strange because it wasn't a sad day; it was a day of celebration and joy. He got to meet all the family and spend so long with us. Everyone left around 7pm and I just sat and soaked him up. Nev's sister was flying over from London and was due to arrive around 10pm.

Around 9:30pm Eoin struggled for the first time. He gasped and brought his hands in to his chest. I held him tight and told him it was okay to go. He recovered though and was in great form when Niamh arrived. She held him as we chatted about his speedy arrival and his day. She left around 10:20pm and we settled down for the night. We decided we'd take it in shifts to sleep while the other one held him. Deep down I knew I wouldn't be able to take my sleep shift; I didn't want to miss a moment of his life. Nev lay on the bed while I sat in a chair with Eoin. He started to struggle and we both knew it wasn't going to be long. He'd gasp and the time between each breath would get longer. At 11:45pm Eoin passed away in my arms with his Daddy sitting right beside us. He gave a big gasp and Neville reached over and stroked his cheek. He gave one final gasp and we knew he had gone.

Eoin lived for 12 hours and 19 minutes.

We held him and cried. We called the doctor to pronounce him and when she had gone we took photos and imprints of his beautiful hands and feet. At 1:30am a nurse arrived to take him away for the heart valve donation. It's great to know that Eoin gave the gift of life to someone else and because of him some other family have been spared the pain of losing their child. I tried to sleep while he was gone and he was back in my arms at 3:30am. We had given them clean clothes to put on him and the nurse told us they had changed his nappy as he had wee'd during the day! I put him in his little cot beside my bed and slept till early morning when I brought him back into bed with me.

We spent the next day in the room with him. Our families came in to say good bye to him and Neville's other sister drove down with two of Eoin's cousins to meet him. That evening we sat on the bed with Eoin between us as we watched TV and ate chocolates. Like a normal family night in.

The next morning we stripped him down and examined every inch of him. We took loads more photos and I eventually looked at his head. It was nowhere near as bad as I had imagined. It was so sad that something so small was so catastrophic. I held him close until 11:26am, 48 hours after his birth and we called the nurse to bring us to the mortuary. I carried him there, down the lift and across the carpark to the small oratory. Inside the candles were lighting and there was a moses basket in front of the altar. We laid him in it with his little elephant and said goodbye. It was the hardest thing I've ever had to do.

We spent the next day preparing everything for his funeral on Monday, 24th November. We had already picked out readings so we typed up a leaflet and made all the arrangements. On Monday morning we went back to the hospital. They had put Eoin back where we had left him in the oratory. Sr Margaret had typed up a prayer service with all our names in it. I held Eoin as she read through the prayers. We held him close and cried. He still looked the same but felt cold and his cheeks were so hard. His little hands were still soft. We had intended to change his clothes but he looked so peaceful that I didn't want to disturb him. We had also talked about taking a lock of his hair but I didn't want to take anything from him, he was perfect as he was. I swapped his blanket and elephant so I could keep the ones with his smell on them. We placed his little coffin in the moses basket and laid him down in it. We gave him his elephant, the book and card from Caoimhe and letters that Nev and I had written to him. Neville closed his coffin and carried him out to the car. I sat in the back with him and we brought him to our parish church. There was a small table in front of the altar. We placed his coffin there and put up a photograph of him, his elephant and his baptismal candle.

So many people came for his funeral. It was amazing. The priest spoke for ages about Eoin and his little life. Neville and I lit his baptismal candle. My Dad read the first reading, his auntie Clare did the second. Aunties Kathy and Niamh did the prayers of the faithful and his cousins Eimear and Oisin brought up the gifts. After communion Neville spoke about Eoin, about the joy he brought us and how proud we were to be his parents. I don't know how he managed to speak, he was brilliant. My Mum read a poem as the reflection. People sympathised with us in the church. There were lots of people from work, friends of both our families, aunts, uncles, cousins, neighbours and even old school friends of mine. I had wanted a 'proper' funeral to acknowledge his short life; I was delighted that so many people came. The cemetery was a short drive away. My sister Emma and her husband Eamonn brought the three of us. Neville carried Eoin's coffin and lowered it into his grave. He placed three long stemmed white roses on top of his coffin; one from me, one from him and one from Caoimhe.

Goodbye my beautiful sweet son, I miss you so much. I will always love you and cherish the wonderful memories you gave us.

(written on 4th February 2009)


Jennie and her husband had two healthy boys after Eoin; Cillian was born in November 2010 and Ruairí in August 2012



Last updated April 3, 2019