Caring for Special Babies & Children/Adults
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)


Peadar’s Story

We found out in September 2009 that I was pregnant with our second baby. We were delighted.

On the 11th December I went into the hospital for my first visit and scan. I was 17 weeks pregnant. The midwife began the scan and the first thing I saw was Peadar’s heart beating away! She began to take the measurements and it seemed to take a long time. I asked was everything ok and she said she was trying to get the  measurements for the stomach bubble and couldn’t. The baby was moving around a lot and she couldn’t get all the measurements that she needed. I would have to come back at 20 weeks when everything should be easily seen. I didn’t know whether or not to be worried but we decided only to worry if we had something to worry about. We had a lovely Christmas, our first with our little girl Rose.

I returned to the hospital for the follow up scan on the 29th December. The midwife began by looking for the measurements of the stomach bubble. She said that she couldn’t see it and maybe I would have to come back in a half an hour when the baby’s stomach should have filled again. She kept on looking quietly however and said that she was going to get a colleague. I lay there not knowing what to think. When the other midwife came in she took one look at the scan and said “your baby has a cleft palate“. I was shocked as I had been expecting to hear something about the stomach. She kept looking and as she moved the stick around my tummy she announced that my baby’s heart was on the wrong side and she couldn’t see a stomach or a diaphragm. She also measured fluid on Peadar’s brain but said that it was ‘just about’ in the normal range. I felt like the air was knocked out of my chest with each thing she said and I couldn’t breathe properly. The midwives left to get a doctor and allow me time to ring Peter. I knew he would be waiting by the phone but he didn’t expect to hear “there is something wrong with the baby….” The doctor arrived and said she had concerns and was sending us to Dublin to a foetal specialist for more scans and tests. When the doctor left I asked the midwife did she know what it meant? She said that it could be a chromosomal disorder due to the number of different problems that our baby had, but she couldn’t be sure. I managed to walk out of the hospital and drive myself home in a daze of shock and despair.

We had to wait a week to be seen by the foetal specialist. I don’t know how we got through those awful days of waiting. I just remember one day being physically very sick with the shock of what we had been told and the uncertainty of the future. Our world had been turned upside down and nothing would ever be the same again.

On the  6th of January we went to Dublin. The doctor started scanning Peadar in detail, from his toes up. I knew when she stopped at his heart and studied it for a long time that it was not good news. She moved onto the stomach area and again studied it for what seemed like an age. Peadar wouldn’t let her look at his face. He kept his hands up as if playing hide and seek!

After the scan we were told that Peadar had a hole in his diaphragm which had allowed some of his intestines up into his chest, pushing his heart over to the right hand side and not leaving enough room for it or his lungs to develop properly. He would not survive long if he was born alive. We asked the doctor how long did he think he would live for and he said anything from a few minutes to a half an hour. We were told that Peadar’s heart could stop beating at any time, as it was weak, but he would more than likely survive till nearly full term. We were then offered an amniocentesis which we decided to have done so we could find out exactly what was wrong with our baby.

Over the next few days we waited with dread for the results of the amnio. When we went back to the hospital to receive the results, we got the worst possible news. Our little baby had been diagnosed with Patau’s Syndrome, a condition described to us as being ‘incompatible with life‘. We also found out we were expecting a son. We were told our local hospital would continue with our care as there was nothing else they could do for us in Dublin. I remember being very happy to hear I was having a boy, a son for my husband, then making it back to the car and howling like a wounded animal with the pain of the news.

The next few weeks went by in a blur. My husband was a rock and between us we decided that we were going to make the most of the time we had left with our kicking bundle. I took my maternity leave early at 24 weeks and myself, Peter and Rose headed away for a mid-week break. Peadar fitted in his first and only family holiday!

The following weekend on Sunday the 7th February I went shopping. I was in high spirits and delighted to have a little Peadar and me time. I was talking to Peadar on the drive and asked him if he was ok. I felt a gentle movement like he was doing a somersault and I smiled to myself reassured. That was the last time I felt my baby move. I think it was his way of saying “goodbye mammy” as he slipped away gently.

That evening I told my husband that I was a little worried as I hadn’t felt Peadar moving in a few hours. We agreed to wait and see what happened when I got into bed, as that was when I felt the most movement. That night I really began to get worried as I felt no movements and a dread started to come over me. We went to our GP the next morning. I will never forget lying on her couch as she tried and failed to find Peadar’s heartbeat. We were sent to the hospital where we waited for the doctor to come in, turn on the scanner and very quickly confirm that our baby’s heartbeat had stopped. Peadar was gone.

I could hardly believe my husbands anguish and grief, never mind try to take in my own. The midwives there were very nice and explained to us what would happen. I was to take a tablet which should slowly start my body getting ready for labour. In two days time on Wednesday 10th February we were to come back to the labour ward. I would be induced and deliver Peadar.

I don’t remember getting home that day. I remember staring at the tablet for a long time that evening not wanting to take it, not wanting to end my time with Peadar. I took it in the end.

On Wednesday morning we headed up to the hospital not knowing what was ahead of us. I was given a tablet to induce me that morning but nothing happened. An hour after the second tablet I started to feel the labour pains coming on fast and strong. After three hours of labour my waters broke and Peadar was delivered breech. He was put into my arms gently and I stared in wonder at our tiny son. He had my shaped eyes and his daddy’s skinny legs!

Myself and Peter were delighted that our beautiful son was finally with us. I didn’t know what I would feel but we were content at that moment, just happy to all be together.

Peter stayed with us in the hospital that night. Peadar was wrapped up in his tiny basket. It was very quiet and peaceful. I got out of bed lots of times and stroked his soft cheek as if it was the most natural thing in the world. As if our little baby boy would always be with us. In my head that night I organised everything I wanted to do for Peadar over the next few days. This was my one chance to get it right for him.

As the sun came up that beautiful day I held my son in my arms and stared at him from every angle trying to stamp his every detail into my mind forever. This was my most precious peaceful time with my baby.

Peter woke up and we stared some more and took lots of photo’s. Both myself and Peter wrote a letter to Peadar and made a copy of it. One to put in his coffin telling him how much we loved him and how we were so glad to have met him. We also put one of Rose’s teddy’s and a single red Rose from his sister in his coffin, along with a photo of us all together. Our lovely midwife took Peadar away for a few minutes to fit him in his coffin and when he came back we tucked him in nice and cosy and put our special mementos in with him. It was teddy’s job to mind him. Peter was very strong and distracted me as we closed the lid of the coffin and saw our son for the last time. We carried him out of the hospital in his tiny white coffin and brought him home for his one and only night with us.

Looking back I’m so glad we took Peadar home even though it was heart breaking. I lay on the floor with my hand around his coffin not ever wanting to let go.

The next morning we were kept going through the motions for Rose. Peters family began to arrive for the funeral. Peadar’s coffin was on the floor surrounded by Rose’s toys. I know he would have been happy that Rose was banging her toys off his coffin. The only chance she got to play with her little brother! I struggled when it came to taking Peadar’s coffin out of the house for the last time, knowing he was never coming back.

Peter drove to the graveyard as I held my little baby’s coffin on my knee for the last time. It was a short but beautiful ceremony at the graveside for Peadar with both our families there supporting us.

Peadar was such a brave little soldier. He fought for every day of his short life and left us peacefully when it was his time to go. We are a whole lot better off having had Peadar in our family. I have been privileged to be his mammy. His short life has changed mine forever. He taught me so much about life. The most important being love. I will always love and miss my baby Peadar. I am a very lucky and proud mammy.