Ethan’s story

Ethan was only 886g grams when he was born, and his doting parents had to wait an agonising 38 days for that wonderful first cuddle.

Ethan and his twin brother Harrison were born unexpectedly early at 27 weeks. The tiny boys were cared for on the Neonatal Intensive Care Unit, unfortunately after just 8 days of life, little Harrison passed away.

Ethan’s hospital journey would be a long one – 256 days in total. Ethan was only 886 grams when he was born and aside from one cuddle with Harrison before he passed away, Ethan’s first proper cuddle with Mum Tara was not until he was 38 days old. Up until then parents Tara and Daniel were only able to put their hands in the isolette, a special crib, and touch Ethan’s little hand.

Ethan was disgnosed with severe neonatal chronic lung disease.

Ethan is making progress at home and as time goes on and he grows stronger, he requires less respiratory support. He began his journey requiring significant 24/7 support but now mainly requires oxygen only when he is sleeping or sick.

A few months after finally making it home, Ethan had to return to hospital for treatment of craniosynostosis.  This was an almost eight hour surgery that  corrected the malformation of his skull.

Mum Tara says “It’s been a very long, traumatic and stressful road for our family but we are choosing to call it a ‘life detour’ – we got home eventually – we just took the long way around!”

“We are so very lucky to have had so much support from our family during this journey and whilst we are devastated that we have not come home with our twin boys together, we are so grateful for all the help Ethan received that allowed him to come home with us. As he grows up we will tell him all about his big brother Harrison.”

Story written and details correct June 2019

Other ways you can help

Everything we do for sick and injured kids is made possible by the generosity and support of our donors, partners and the community.