By Alesha Capone
When baby Boet was born 13 weeks premature, he weighed just 689 grams and was barely the size of his favourite soft toy, a platypus.
However, his parents Marijn Mees and Joris Steeman, said their “tiny baby had a very big personality from the get-go” after he came into the world on December 21, 2018.
Boet’s sisters, Caat and Eef, who are now aged eight and six respectively, were delighted to welcome their little brother into the family.
Joris and Marijn had experienced several miscarriages before Boet was born, so his arrival was an extra-special event for the Point Cook family.
Unfortunately, Boet was born growth-restricted with the umbilical cord wrapped three times around his neck.
After five weeks on a ventilator, it became clear how underdeveloped Boet’s lungs were, and he was transferred to the Royal Children’s Hospital.
He was connected to a high-frequency jet ventilator, which was gentler on his lungs, and after 12 days Boet improved.
He began feeding well and grew much bigger.
“Boet loved baths and he loved riding around on his pram in the ward,” Marijn said.
In May, the family were planning to take Boet home when he came down with what appeared to be a cold.
He ended up spending another eight weeks on the jet ventilator, with tests revealing he likely had a rare fungal infection in his lungs.
The family were told Boet was unlikely to survive, so Joris and Marijn took plaster handprints of their son’s hands and often bathed Boet with Eef and Caat’s help to create memories together, while relatives and medical staff formed a ‘Team Boet’ group to lend support.
“We’d always say: ‘As long as he fights, we will fight with him’,” Joris said.
Although Boet rallied and started showing improved health, sadly he developed sepsis and died on September 1, 2019 after 255 days in hospital. He was 8 and a half months old.
After Boet died, Caat and Eef wanted to bake cookies and sell them to help raise funds for babies in Neonatal Intensive Care Units (NICUs).
The family also held a park run and raised $6000.
Following this, they started a not-for-profit organisation named ByBoet that raises funds to support research and contribute to medical equipment and other items for NICUs.
At the moment, ByBoet is raising funds for research which Dr David Tingay – one of Boet’s main doctors – is conducting through the Murdoch Children’s Research Institute to better understand lung function after birth.
As well, Caat and Eef have started a Superhero Day, encouraging their schools and other organisations to dress up and raise funds for ByBoet annually on November 19.
Details: www.byboet.org/
