In the following account, Ileana describes the story of the loss of their baby boy Darragh. She and her husband traveled in 2017, while the country was debating the need to hold a referendum on the 8th Amendment and the Citizen’s Assembly was hearing testimony. in that . Since the passing of the legislation, the restrictive wording and criteria to determine that a condition is ‘fatal’ has meant that the majority of women contacting us for support are STILL falling outside the legislation. Their experiences of trauma and loss are only heightened by having to navigate a stigmatising system post-legislation that fails them, during a pandemic to boot…The time to review the legislation is coming upon us fast, the government must honestly and compassionately examine and correct these failings with this review.

Ileana’s story

“We decided to try for a baby, by surprise I found out I was pregnant early in December. I didn’t think it could happen that quick and we were over the moon. We went private for an early scan as I wanted to be reassured. We heard the heartbeat and I can’t even describe the feelings that I experienced at that moment. It was something magical; the realisation that a new life was growing inside of me. We were going to be parents and we were already in love with that tiny baby.

The second scan we got was when I was a little over 12 weeks, the baby was growing and measuring on track. It was after that scan that we decided to share our news outside the family and we made a lovely post on Facebook.

The pregnancy was progressing very well, we had the anatomy scan booked for April 5. We were so excited to find out the gender of our baby. I was about 21 weeks pregnant.

On the day of the appointment, we felt very nervous. At first, I thought that it was normal to feel that way but at the same time, I felt very uneasy. I think we were starting to sense that something was wrong. When it was our turn the midwife gave me a leaflet, which I didn’t even have the time to read, it was about anomalies that can be found during the scan, related to specific genetic syndromes.

As the midwife started to scan I felt more uncomfortable. She asked me if I wanted to have a break but I told her to go ahead. After just a few minutes she stopped, looked at me and said that there were areas of concern, the main was the heart. I remember staring at her face in disbelieve while she was speaking. I felt like a stone, I couldn’t move. I turned to my husband and he was the same, you could clearly see the fear in his eyes. I burst into tears. I am supposed to protect my baby and I felt like I didn’t do my job.

The Fetal Medicine Unit was called straight away. They sadly confirmed what the first midwife had found out. They went through all the defects our baby had and they also said that it could have been a sign of a syndrome, Trisomy 13 or Trisomy 18. They needed to perform an amniocentesis to be sure. I decided to have it that morning. We had to know, we couldn’t wait any longer considering that the results were back after a week.

From that morning our lives changed forever.

After a week we went back to know the results of my amniocentesis. I wasn’t expecting good news and the results were clear, our baby had Trisomy 13 also known as Patau Syndrome and all his cells were affected. The doctor said to us that in most cases the heartbeat of these babies stops naturally but if they make it to birth they won’t survive for long. I had two options: going full term or terminate the pregnancy but I had to go abroad as abortion was illegal in Ireland at that time.

I made my decision and my husband supported me – I couldn’t go full term. I couldn’t pretend that everything was fine knowing what the outcome would be. I couldn’t do that to my baby and I couldn’t do that to myself and my husband. The doctor suggested a hospital in the UK where other couples from Ireland went in the past. They offered to send my info to them but we had to make the call ourselves.

Since we found out that our baby was a boy we picked a name, Darragh Alessandro.

My husband called the hospital in the UK to make the appointment, I didn’t have the courage. He asked about all the info we needed, including expenses. He then explained to me the procedure and I remember being in shock and very scared. They booked us in for May 2. I had to wait for about three weeks and it was so frustrating. I had to ask my parents for the money to cover the procedure, the hospital stay and also the casket, cremation and funeral. We paid for the flights ourselves.

On the day we flew to the UK I felt so uncomfortable in the airport. I really felt ashamed of being on that plane, like if I was being constantly watched by the other passengers. I couldn’t wait to get off it. A taxi brought us to the hospital and I remember so many emotions going through my head but most of all I was so afraid that I wasn’t strong enough to handle that delicate situation. I knew the outcome but I couldn’t predict the effects it was going to have on me.

We had Darragh on May 3, 2017; I was over 25 weeks.

The care and compassion from the hospital was something I could never imagine. The bereavement team checked on us every day. This is something that we will never forget and that meant so much for us. Despite the delicate situation they always showed support. They always acted through kindness and they took care of our baby when we had to leave.

The last goodbye to Darragh, was something that we will never forget. It is still so vivid in my head. The hospital had a nursery where parents can spend the last moments with their babies. The setting of the room was lovely. We stayed there for a while, trying to push back the goodbye as much as we could. Unfortunately, a plane was waiting for us and we had to leave. I felt like my heart was being ripped off my chest. That was the realisation that we couldn’t hold him or see him anymore after that day.

Not being there for Darragh’s funeral is something that will always stay with us. It’s very painful and I feel very bad about it but we didn’t have a choice.

On the day we went to get his ashes back they gave us a letter to say that we were carrying the casket of our son to bring with us to the airport. Declaring something so precious at security was horrible. My husband whispered to the officer and I remember looking at the other people queuing in case they would hear.

I learned a lot about myself from this experience and I’m still learning. I think about Darragh every day, the pain of losing him might ease with time but the pain of having to travel will be with me forever.

So many women are still neglected in the care they should receive in this country and it’s heart-breaking. People voted for a change but sadly the change has yet to come.”