Today is Pregnancy and Infant Loss Remembrance Day. Today is a day to promote greater awareness and support for families whose lives have been impacted by the loss of a child during pregnancy, at birth or in infancy. Families just like Samantha’s and Richard’s.  

At Samantha and Richard’s first obstetric appointment, they quickly knew that something wasn’t quite right for one of their twin girls. Each week, Samantha and her partner would wait with bated breath to find out if ‘twin one’ – Nora – would miscarry. In time Nora would not miscarry, but by their 20-week scan, Samantha knew their baby was suffering with a congenital heart defect.

At 26-weeks, Samantha was rushed to hospital with preterm labour where she discovered that Nora had a vasa previa, where her main blood supply was dangerously positioned across mum’s cervix, putting her at significant risk of bleeding out.

“We were told to prepare for the worst”, says Samantha.

“I spent 12 days on bed rest in hospital, anxious that I would start bleeding, dilating, or that my waters would break and we would lose her. But we didn’t.”

Samantha gave birth via emergency C-section to both of her twin girls – Nora and Clodagh – both tiny and fragile. Clodagh stayed in the Neonatal Intensive Care Unit (NICU) for 60 days, meanwhile Nora was prepped for her first surgery on her first night earth-side.

In conjunction with her congenital heart defect, Nora was also diagnosed with Oesophageal atresia/Tracheo-oesophageal Fistula, a condition where her stomach, trachea and oesophagus had not formed correctly. A fighter from day one, Nora endured six surgeries and was diagnosed with close to a dozen different conditions.

“We sat in many meetings with the amazing team of doctors and nurses at the RCH, who over many months had become family to us. Many times those meetings were the kind that thankfully, most parents will never have to sit through. Difficult conversations about Nora’s chance of surviving surgery, questions like do we want to continue her medical care? We sat in those meetings often in disbelief at what we were hearing as more and more hurdles were seemingly thrown in her path.”

“The one constant through all of this, our one certainty and source of hope that we should keep fighting, was Nora. She had a spirit and energy in her that amazed us and her Butterfly team time and time again.”

“They say that the eyes are the window to the soul – well this was never truer than when we looked into Nora’s eyes. Even when her doctors and nurses feared the worst, she would look at us with these deep brown eyes that seemed to say, ‘I’ve got this mum’.”

Nora’s final surgery to attach her oesophagus and stomach connection was scheduled three weeks before Christmas, 2019. Unfortunately, Nora came down with a temperature that morning and a few days later, Samantha and Richard found themselves having another one of those difficult conversations with her medical team.

Nora had developed sepsis from a viral infection and at this stage, there was little more that could be done to support her.

“No longer able to see her beautiful brown eyes for reassurance, we knew that the time was coming to say goodbye. On 19 December 2019 and on her 198th day in the NICU, we arranged for Nora to have one more peaceful, magical day with her family.”

“We sang to her, we read her favourite book, we had a private Christmas concert with the Starlight captains, and we took her on our first family walk in the garden and had professional photos taken. She had cuddles from mummy and daddy and first cuddles with nan and pop. We dressed her in a beautiful outfit chosen by her nana and godmother. We took her hand and footprints.”

“Many of her nurses came to say goodbye, several coming in on their day off. Surrounded by her brother, sisters, grandparents, godmother, aunties, uncles, special friends, her nurses and doctors – Nora took her last breaths all on her own, no more ventilator, and peacefully passed away in our arms.”

“Nora’s courage and fighting spirit is the reason we survived six and half months in the NICU and is what continues to inspire us every day to pick ourselves up and live life. We live because Nora fought so hard too. There is not a day that goes by that I don’t look at a photo of her and feel immense love and awe of her strength and perfect imperfection.”

“We are approaching Nora’s second anniversary this Christmas. The first year was like walking in a haze of grief, every day was tinged with raw sadness. While our other children – our son Tiarnán and daughters Maeve and Clodagh – kept our hands busy and brought us joy in their own ways, the gaping hole left by Nora was so immense that sadness, longing and despair were never very far away.”

“This second year has been different. While our lives have moved forward as they inevitably do, we have found a way to include Nora in our every day. We say her name all the time, we share stories about her, we talk about heaven, we play her songs, we read her favourite stories, we look at the many photos and videos we have of her. For special occasions, we light her candle and take pictures with our Nora-bear.”

“To her brother and sisters, Nora is and will always be their sister, it’s just that she’s in heaven now. They proudly tell anyone who asks all about her. We recently welcomed our fifth child into the family – baby Finnian – a little brother that we believe was handpicked by Nora just for us.”

“If I was to give advice to a family in the same situation it would be this – take your baby with you every day. Make them a part of your life, make no apologies for talking about them, celebrating them, remembering them. We promised Nora that we would take her with us every day and that is what we do, and we do it with so much pride that she was our daughter – always our daughter.”

Samantha has her own blog where she writes about motherhood after infant loss. To read what Pregnancy and Infant Loss Remembrance Day means to Samantha, please visit her site.

If you or someone you know is struggling with infant loss, there is help available. Please contact Lifeline on 13 11 14, Beyond Blue on 1300 22 4636, SANDS on 1300 072637 or Red Nose on 1300 308 307.