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Josh’s Story

I thought I’d share my son’s story, he is exceptional in every manner of the word. Joshua Chester. Born 12 weeks premature @ 990g on 6/7/15. The NICU saw 2 infections, necrotizing enterocolitis, chronic lung disease, 4 blood transfusions, beginning stages of retinopathy, bicuspid aortic valve, enlarged aortic root, cardio myopathy and severe hypertension.

He came home on 3 antihypertensives, iron, multivitamin & reflux medications, NGT and oxygen. Multiple sleep studies and endless allied health saw Josh come off home-oxygen after 12mths. In the last 4 years Josh has remained on multiple antihypertensives and has been going back to hospital for blood pressure monitoring regularly. Josh has had minimum 3 ICU admissions each year with influenza, RSV, pneumonia and other severe illnesses. In March 2018 Josh lost consciousness and was admitted for over a month. He was treated for suspected vasculitis. Josh was treated with steroids and immune suppression protocols. In August 2018 Josh lost consciousness again and was admitted to hospital. During this admission he required multiple blood transfusions and suffered from 2 aggressive hospital grade infections. He underwent 2 laparotomies, several pericardiocentisis procedures resulting in multiple pericardial and pleural drains and an emergency thoracotomy. Josh required CPR on 4 occasions, on one of those he was resuscitated for over 60mins. Throughout the admission we were asked twice to say our final goodbyes.

Josh had 2 separate vascular grafts put in during the laparotomies and a left nephrectomy. Finally Josh came home in late October 2018. He had an NGT again and had to relearn how to walk and talk. Josh is unique as a paediatric vascular patient and his surgeries were bespoke due to his unique vasculature.

We are so lucky and so grateful he’s with us today and he has a huge community supporting him. Josh may even be attending kindy in 2020, depending on his ongoing allied health journey (in conjunction with his nephrology, vascular, immunology and cardiology specialists).

We’re also not planning on being in hospital this year for Walk 4 Prems and have been bold enough to purchase early bird tickets.

Mum, Gabrielle



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