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

Danann

Danann Atlas Riordan:

A wild and precious life

By Maria Moynihan

 

 

One of the very first articles I wrote as a newly qualified journalist in 2005 was about the support that SOFT Ireland gave the Rispin and Farrelly families when their sons, Niall and Patrick, were diagnosed with Edwards’ Syndrome. You can actually still read it on the SOFT website. I was just 22 at the time, but I remember what struck me most that day was not the devastation of the diagnosis, but the love that both families had for their babies and how much they had brought to their lives. Little did I know then that I would experience this for myself, 14 years later, with our son, Danann Atlas Riordan.

On 3 March 2019, myself and my husband Danny discovered that we would be expecting our first child that November. It was a trouble-free pregnancy: I ran the Paris half marathon one month in, hiked hilltops, swam in the sea. We had scans at eight, 12 and 16 weeks and everything appeared to be going according to plan. I will never forget the first time I heard my baby’s heart beat- so strong and steady- and saw him “wave” at us on the ultrasound screen. Plans for our first Christmas, our first family holiday, formed in my head. I’d find myself doing things like clocking the distance from our house to the country school out the road, to see if it would make sense to send him there. There was no doubt in my mind that he was coming to us. After all, if there was a problem, surely we would have realised by now?

You might notice that I’m already saying “him”, but at the time, we did not know if we were expecting a baby boy or a girl. We wanted a surprise, because how many surprises are left in life? Indeed, my greatest fear walking into my 20 week scan was that the sonographer might let the gender slip by accident. What I never expected was to be told there was a problem- or a few problems- and to be referred to a fetal medicine specialist in Cork. Or that six, stomach churning and sleepless days later- on my 36th birthday- that our baby would be diagnosed with Edwards’ Syndrome. All that morning, I had been getting text messages from friends, wishing me the happiest day and year ahead with our little baby to look forward to. Little did they know the reality. I felt like I was in one of my own articles, only I could hardly have imagined or written this story.

It was hard to equate the diagnosis with the little baby we saw on screen, so full of life. However, from the start, myself and my husband were united in the fact that we were not going to look at our precious baby as a “diagnosis”. Once we found out that he was a little boy, we gave him his name- Danann Atlas- Danann after the Tuatha De Danann from Irish mythology, Atlas for the poem by UA Fanthorpe that we had as a reflection at our wedding. And once we knew that he was safe and happy as long as he was in my tummy, we decided that we would let him lead the way, for as long as he wanted. His life might be short; but every second of it was precious to us.

I won’t pretend that those early days were easy. I can honestly say that was the longest, loneliest night that my husband and I ever spent, side by side in our sadness. I remember my heart racing at the thought of what lay ahead. How was I going to get through a pregnancy, a labour, a maternity leave, without our baby? I felt that there was no place for me in the “maternity” world. Instead of buying a cot, we had to think about a casket; instead of decorating the baby’s room, we had to decide where we would like Danann to be laid to rest. It felt that we were living in a nightmare that there was no way to wake up from.

However, one of the best decisions I felt we made was to be open about Danann’s diagnosis from the very start. I actually put up a post on my social media explaining what had happened, as I felt it was easier to tell people all at once, rather than hide it or have to go through the story every time somebody commented on my bump. It might sound like a strange thing to do; but the support that we received was phenomenal. People said that we were brave to share our story, but the truth is that it would have been a very lonely road to walk alone.

The other thing I was very grateful for was the advice of friends who had lost babies before, albeit in different circumstances. Some had experienced very sudden losses, and it made me realise that I was in mourning for a baby who was still here with us. We could concentrate on what we stood to lose; or celebrate the time we had. We chose to celebrate and make memories, because otherwise, what would we have to look back on?

So my husband and I went away to West Cork for a few days to rest and reset.  We bought a home heart monitor online, to check in with Danann every morning and night, just to give us reassurance and that extra connection with him. We decided to go ahead with the baby shower that my sister had been planning, but instead of gifts, asked that guests write Danann a letter or a card that we could keep to read later. My friend Asia- a photographer- came all the way from the UK to take the most beautiful pregnancy photos. We went for a 3D scan and were delighted to see Danann looking so comfy and cosy; and that he had my nose! We took selfies, read him stories and sang him songs. Family, friends- and complete strangers- knitted baby booties and cardigans, sourced premature clothes, painted pictures and sent us everything from personalised story books to sweetpeas. If anybody invited me for a walk or a coffee or a swim, I usually said yes. They say it takes a village to raise a child, but it certainly takes a village to support a couple through a pregnancy like this.

I remember at the start of our journey thinking that I would never wake up happy any morning, ever again. Danann soon shattered that. I can honestly say that our son brought us such love and joy as we tuned into all his little ways, his likes (pineapples and fine dining), his dislikes (too much shouting during the first Kerry v Dublin All Ireland match) and his incredible spirit. If we seemed strong, it was only because Danann made us strong. 

Throughout this time, we were cared for exceptionally by the team at Cork University Maternity Hospital, including our obstetrician, Dr Noírín Russell, and our bereavement midwife, Anna Maria Verling. While there was no way to change Danann’s diagnosis, they were always so clear and compassionate and saw him as the special child that he was. Rather than dread our scans in Cork, we looked forward to them, as Danann continued to show great courage, despite all the challenges he faced.

We also attended private hypnobirthing classes, which gave us greater confidence for what we would face in the labour ward. The thought of giving birth is terrifying for most first time mothers I am sure; but the thought of losing our son during or shortly after labour was something we had to be prepared for as well, even though we hoped that we would have precious time together, to hold Danann and tell him how much we loved him.

I continued to work until I was 36 weeks pregnant for my own sanity, taking two weeks of holidays before my maternity leave was officially due to start. Thank God I did, because when we went for our scan at just over 37 weeks, it appeared that while Danann was still very strong, the placenta was starting to fail. We made the decision that we would go for induction in the hope of having a chance to meet him, rather than risk him passing away before birth in the womb. This was scheduled for two days later. My husband had to wrap things up at work and I tried to get as much rest as I could, and the night before, we went to my parents’ house for pizza. Leaving our home that morning, however, was one of the saddest moments of our journey as we knew that it was unlikely that all three of us would be returning the way we left.

However, thanks once again to the incredible staff at CUMH, I can honestly say that Danann’s arrival to the world in the early hours of 19 October 2019 was as peaceful and as gentle as it could have been. Sadly, our little boy- who had fought so long- slipped away just shortly before he arrived and was born an angel. Previously, this would have been my worst nightmare: to go through labour to discover that we had lost him at the very last stage. However, his birth was the most beautiful moment of our lives, and it comes as some comfort to know that he never had to struggle or suffer in the outside world, and that all he knew was the safety of the womb. He was just under 4lbs and 44cm long, with a shock of dark hair and the image of his daddy, but with my nose. He was the most perfect baby we could have ever hoped for and we were so proud of him.

Once Danann was washed and dressed by his daddy, we were transferred to 4 South, which is where families go after they have experienced a loss and are looked after with such care and compassion. Both of our families came to meet Danann, as did my friend Carol, a photographer, who had travelled to Cork to take pictures for us. Later that day, the chaplain called to arrange for Danann to be baptised: a very special occasion that meant so much to us. The charity, Féileacáin, also visited to make Danann’s handprints and footprints. The midwives who had delivered Danann called back to see us, as did Anna Maria and Dr Nóirín. It was clear that Danann had a huge impact on everybody he met.

Thanks to CUMH and Féileacáin, we were able to bring Danann home in a “cuddle cot”. The chaplain had suggested we have a “Welcome Home” ceremony, which we invited our friends who were living locally to. Again, we were determined that this would be a special evening to celebrate Danann, and after the priest finished the ceremony, I read the Mary Oliver poem, The Summer Day, which ends with the line: “Tell me, what is it you plan to do with your one wild and precious life?” Danann might have only lived for 38 weeks, but his life was a wild and precious thing.

After our guests had left, we brought Danann to our room where we had cuddles in bed before placing him carefully back in the cot. The next morning, our families came to say their goodbyes: a very difficult moment again. Danann’s burial was not until 3pm, so we spent a few quiet hours at home, just us three, walking him through every room in the  house, bringing him to the back garden and just sitting on the couch, tucked up under a blanket together. But sadly, the time came when we had to place our son in the little white casket that CUMH had organised for us, engraved with the message of our choice: “Danann Atlas Riordan, 19 Oct 2019. So proud of you. Love Mammy and Daddy.” We had bought two sets of blankets, two toy tractors and two teddies, and so we kept the set he had in his cot and placed the new set with him for his final journey. We also divided a bunch of lavender and wild grasses that my friend had given us, placing half with him and keeping the other half with us. I now wear them in a necklace made especially for me.

Leaving home for the final time was another wrench, but on the way to the burial ground, we stopped at the small church where we got married, and brought Danann in to show him where his mammy and daddy’s journey as a family had started: a journey that will forever include him. We lit three candles, kissed him and brought him back out to the car, where we laid him down for the final time, placing the lid on his coffin together: the hardest thing we will ever do. We then brought him to his final resting place- between the mountains and the sea- where we played Rainbow Connection by Kermit the Frog after the priest had finished his prayers.

As I write, it’s just seven weeks since we said hello and goodbye to Danann. It’s a strange space to be in; a new mother and father, a family, but without having our baby physically here with us. We don’t know what lies ahead of us, but we do know that we would not have swapped our experience with Danann for anything. Our loss might be great, but our love is greater. And I know that his legacy will live on. Strangers as far away as the United States and Canada know his name. One card I received said, “He taught me what it means to be brave”. I could fill a book with the messages we have received.

I’ve thought about what I might like to say to a parent reading this who is at the start of their journey if they have decided to continue with their pregnancy. I know that it’s very easy to drown in a diagnosis like this; but your baby is not a diagnosis. He or she is your baby and is so special. And you are special too. The strength and courage you will find within will astound you. There is nothing you will not be able to do, because you are a mother or a father and this is your baby. And like any parent, you will do anything for your child. Just take each day as it comes; and make the most of each day.

Danann was the best thing that ever happened to us. He taught us more about life in 38 weeks than we could ever have taught him. He will always be our son. What will survive of us is love.