Maria's Story

"Is he your first?"

The stranger peeps into the pram at my green-eyed eight month old, who flashes a one-toothed grin in response. He's such a charmer.

"No," I smile. "I have a four year old daughter and a little boy who would be five, but he passed away when he was born."

"Oh God... I'm so sorry for asking," the stranger stutters, instantly regretting her attempt at small talk. She didn't expect this answer. Who does?

"Honestly, there's no need to be sorry," I interrupt. "I love to talk about my first baby, so thank you for asking. His name was Danann; is Danann. And he is very special."

I can't tell you how many times I have had this conversation. But I can tell you that, to me at least, it always feels like a gift. A chance to speak my son's name out loud, to share some of his story. This is how he lives. This is how I love.

On 25 June 2019, on my 36th birthday, I was told that my first baby was going to die. A few days previously, at the 20 week anomaly scan after a textbook pregnancy, the ultrasound technician had picked up some concerning "markers": a cyst on the brain, an omphalace, club feet, a hole in the heart. We were referred to a fetal medicine specialist and told to go home, wait for the call from Cork Maternity University Hospital, and not to Google. Of course I did.

The diagnosis a few days later matched the worst that the Internet had slung at me. Trisomy 18 or Edwards' Syndrome: a chromosomal condition that is not considered to be compatible with life in the majority of cases. While our baby was happy and comfortable in my womb, the outside world was another story. Given the severity of our son's issues, the most we might hope for would be a little bit of time.

While we had options following the repeal of the eight amendment, myself and my husband felt that in our case, we wished to continue with our pregnancy and try to make memories in the short time we would have with our baby. So the day that he received his diagnosis, he also received his name: Danann Atlas Riordan. A special name for a special boy.

I will not pretend that receiving such a diagnosis is easy. In the early days, I read an account where another mother likened the experience to living on "death row". I certainly remember waking up each morning at the start and wondering if today might be the day that my little boy would die. I also questioned how I could stay sane in such an unnatural situation. I should have been preparing for my baby's birth; not his death. However, very early on, I realised that to survive, we would just have to take each day as it came, and treat it as a gift. Danann would lead the way; we just had to follow.

From the moment we got our diagnosis, we were supported by a fantastic multi disciplinary team at Cork University Maternity Hospital, with consultant Professor Nóirín Russell and clinical bereavement midwife specialist Anna Maria Verling. Both women had great expertise but also a deep empathy for our situation, recognising Danann as the special little person that he was, and not just defined by his devastating diagnosis.

Early on, we also chose to share with family and friends the reality of our situation. We stated that it was our intention to love and celebrate Danann for as long as we had him on earth. This, I feel, gave people permission to reach out to us to show their love and support. While I carried Danann, others carried me. My friend Asia came to Ireland to take the most beautiful maternity photos, I was sent personalised story books and jewellery with Danann's name, my sister Katie organised a baby shower, my sister Elaine had a star named after him, friends sourced premature clothing from the US on my behalf... I could never list all the practical and personal ways that people showed their support. But most of all, people showed up. They walked with me and talked with me, laughed with me and cried with me. With one or two exceptions, people did not run from our grief but embraced it by embracing us. So many told me later that they felt that it was their privilege to be a part of Danann's short but special time on earth.

And I can tell you that once the fear ebbed away, it was a golden time. Despite so many obstacles, Danann continued to defy the odds. We visited many beautiful places together- in particular in west Cork- so that we would have tangible memories of our time in the years to come. We read him stories every night, sang to him, swam in the sea, booked a 3D scan, took hundreds of photos and tried to treasure each moment.

Danann made it to 38 weeks, but as my placenta was showing signs of failure, the decision was made to induce labour in the hope of having some time with him. I can't really tell you what it is like to pack a maternity bag and get in the car to drive to hospital, knowing that birth will most likely mean death. All I knew was that I could only go forward, as always following Danann's lead.

Sadly, we did not get the time we had hoped for, as Danann slipped to the next world in the final throes of labour, and was born an angel in the early hours of 19 October 2019. He was the most beautiful little boy: long limbs, a shock of dark hair, elfin ears, my button nose. Like any new parents, we were overcome with love and with pride as we cradled our most precious baby, his warrior's journey on earth at an end. We could not wait to show him off to our family, who had travelled to Cork to meet him. We will be eternally grateful to our friend Carol, who came all the way from Dublin to take family pictures for us. Thanks to baby loss charity Féileacáin, we received the use of a cooling "cuddle cot" to keep Danann's delicate little body with us for as long as possible. We were supported throughout our time with Danann by the amazing team at CUMH, who showed him such respect, care and dignity. This means that what could have been such a traumatic time was actually a period of peace and happiness with our little boy at its centre.

Two days after Danann's birth, we brought him home to Kerry. It was very important that our friends had the opportunity to meet him, and so we held a gorgeous welcome home ceremony in our sitting room, with our little boy surrounded by love and wildflowers. We were grateful to have one night with Danann in our own home together, but as the hours ticked on, we knew that our physical time together was coming to an end. We placed our little boy in his coffin. Nobody else could have done it. I'm still not sure how we did that. But like before, we could only go forward.

Soon, it will be six years since Danann's diagnosis. I find that passage of time difficult, but I try to find comfort and connection in the fact that his story continues to evolve. I know that Danann has given hope to many families who have found themselves in this situation and I try to share my experience with anyone who finds it helpful. I work as a writer and down the line, I would like to develop a workshop or resource to help bereaved families tell their own story for future generations. These stories are so important. They matter.

As I mentioned earlier, Danann has a younger sister and brother, though we also experienced three back to back miscarriages on our family journey in between the births of our living children. It has not been an easy road, but I am grateful for my little family and how these experiences have shaped me. I love how Danann's little sister speaks so naturally about him and can see so many of his features in his little brother. They are their own people, but they will also carry their brother with them, lightly and with care.

There is a line from a Philip Larkin poem that I adore: What survives of us is love. We have experienced unimaginable loss, but also a love that we could have never dreamed possible. Love makes everything possible. Love is Danann's lasting gift to us.