While pregnant with twins, parents Nicole and Ken endured weekly scans to monitor twin B – Kai – who was a mystery boy from the day he was conceived.

Last May at just 32-weeks, it was time to deliver when they were told Kai’s blood circulation was not looking good. “We had had a bit of a rough pregnancy with lots of different scares and theories, none of which came into fruition”, Nicole said.

“Sebastian came out first all screaming and drama from the rude shock of leaving the warm womb. Kai, true to character, was calm, born en caul which means he was delivered still within his amniotic sac.”

After seven hours, Nicole was finally able to meet and touch her identical twin boys through their isolette windows. Sebastian weighed 2.1kg and Kai weighed a tiny 1.3kg.

“They were worth the wait.”

Sadly, Kai was born with a tumour on his ankle which they later discovered was due to a rare condition known as Kaposiform Hemangioendothelioma (KHE). The growth was eating the platelets in his blood and compromising the function of his major organs. As a result, on day two of his life and after his first cuddle with mum on her chest, Kai was transferred to the Butterfly Ward at the RCH. For the next month, Nicole and Ken shared their time here with Kai and at The Royal Women’s Hospital (RWH) with Sebastian.

“We had two very different NICU journeys. At the RWH, Sebastian began enjoying a lot of firsts like breathing for himself, learning to feed, having cuddles with mum, his first bath and eventually wearing clothes.

“Meanwhile Kai’s journey was very different. He had all the RCH experts fighting very hard to figure him out and help him. Once we received the diagnosis of KHE, it was not the full picture of the severity of symptoms that he was showing in his body and his response to the treatments.”

Over the 32-day fight for his life, Kai went through more medical procedures than the average person goes through in their lifetime.

“Time and time again we braced ourselves for the possiblity of losing him, only for Kai to show his tough stoic character and pull through yet another major surgery.

“As new parents we were unsure of what to do – we spent our time helping the nursing staff care for him where we could, as well as singing songs, reading books through his isolette window and talking to him about how loved he was by his family.

“Due to his body not responding to the treatments, Kai became more and more unwell. Sebastian was discharged in June and we were able to reunite them in Kai’s isolette for the first time earth-side.

“As they lay next to each other they both looked at peace, and it’s a moment we’ll cherish as twin parents forever.”

Soon they were told the very worst. “Kai’s condition was deteriorating further and they told us he would likely die in the next couple of days” Nicole shared.

It was at this point that Nicole and Ken’s immediate families came to visit Kai for the first time and say goodbye all at once. “As Christians, we were supported to have Kai baptised and dedicated to God” she said.

On June 6, after spending an hour lying next to his brother and opening his eyes to look at his parents for the first time in weeks, Kai died in Nicole’s arms peacefully while the sun was setting.

“It’s difficult to put everything we have felt and experienced into words. There’s a lot to be devastated about, but also a lot to be grateful for.

“We are devastated that we won’t get to raise him, and for the gaping hole he has left in our hearts. We grieve that Seb does not get to grow up with his twin brother.

“We are grateful for Kai’s fighting spirit, that inspired us to keep fighting for him as his parents in the worst of times. And the lessons that he taught us about how delicate life truly is.

“Kai will always be a part of our family, and Sebastian will grow up knowing his name and seeing his picture around our house.

“I can’t speak for others but can share what has helped us to go on living through this. Our faith which brings us fresh doses of peace when we need it. Our family and friends who have supported us and found ways to keep acknowleding Kai. Speaking to or listening to stories of others who have been through loss has made us feel less alone. Creating traditions with Seb around ways to remember and honour him. And to share Kai’s story with others, as he is a big part of who we are as a family.

“For us, International Pregnancy and Infant Loss Remembrance Day is an opportunity to give time and the space (if they wish) for parents who have suffered a loss to talk about and honour their children.”

Today on International Pregnancy and Infant Loss Remembrance Day, we are raising awareness and support for families whose lives have been impacted by the loss of a child during pregnancy, at birth and in infancy. Families just like Nicole and Ken’s.

If you or someone you know is struggling with infant loss, there is help available. Please contact SANDS on 1300 072637 or Red Nose on 1300 308 307.