We are a loving family of 6: Joris (dad), Marijn (mum) and four beautiful kids Caat, Eef (Boet's big sisters), Boet (forever 8.5 months) and Kiek (Boet's little sister). Boet is our inspiration for ByBoet.

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Boet was born on December 21, 2018, at 27+3 weeks gestation, after a stressful pregnancy due to numerous late miscarriages in the past. He was growth restricted, only weighing 689 grams and 30.6 cm tall, a micro preemie. Initially all seemed well, although he needed a ventilator for his breathing. However, after a few weeks it was evident that his lungs struggled. He was transferred to the Royal Children’s Hospital (RCH) in Melbourne for a special ventilator, the jet. He responded well and could come off in 12 days. From there on he started to grow and feed and develop as a ‘normal’ baby. He was transferred back to the hospital where he was born.

 

We were planning for discharge when he got sick. It seemed just a cold and he hold himself well until 2 weeks after the start when he detoriated quickly for unknown reasons. He had to be put back on the ventilator and was transferred back to RCH in Melbourne. This time he was on the jet for 8 weeks before he could come off. These 8 weeks were scary with plenty of times we did not think he would make it. He pulled off a few miracles. It was at the end of August when he started to get sick again and in the early hours of September 1, 2019, he passed away in his dad’s arms.

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Boet was feisty, had a dogged determination and kept going when all odds were against him. He would tell us what he needed and wanted. So, Boet was in the lead throughout his life, surrounded by love.

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Throughout our NICU journey we missed talking to other NICU families who were ahead of us, we missed finding a sounding board during the most challenging times of our lives. Don’t get me wrong, we were supported really well by Boet’s medical teams but we have learnt that it is very different to speak to people who have been through similar experiences.

 

So, we hope to show some future families, our way and with that show them that they are not alone and they will get through this no matter the outcome of their journey.