BODHI

This is Bodhi’s story about how a complication at birth has greatly affected his life. We want to share with you his triumphs, setback and daily challenges which are a result of this complication. Through the telling of Bodhi’s story, we hope to bring awareness and an understanding of other families facing similar challenges.

Bodhi was born full-term and suffered an unknown complication resulting in a severe brain injury caused by a lack of oxygen. This nearly took his life and we may never know what caused it. This type of injury is commonly known as HIE.

What is hie?

Hypoxic (lack of oxygen) Ischemic (restricting blood flow) Encephalopathy (affecting the brain)

Bodhi spent the first 4 months of his life in hospital. When he was first born he could not breath on his own and was ventilated. We wish we could tell you for how long but those days are such a blur we can’t be sure for certain. Early on it was determined that Bodhi did not develop his suck reflex and was unable to swallow. This means that from his very first meal he was given a Nasal Gastric tube and received all meals via this. After the first 4 weeks spent in the Neonatal Unit at PMH we were sent home and were completely unprepared for the amount of care we now needed to provide our new born son. Within 4 days we were rushed back to PMH in ambulance with full sirens as he went into respiratory distress and turned grey.

As many people who have stayed in hospital for a length of time are aware, the more time you spend in hospital the more likely you are to pick up a bug. This is exactly what happened. One night Bodhi’s breathing went down so rapidly that he was taken to ICU and put on bubble CPAP. Finally, after he had recovered from this we confidently went home – 4 months later – to start our new version of normal life.

Then began the journey of diagnosis – slowly one by one we were given different terms to google. The HIE event Bodhi suffered has led to significant limitations in his abilities. These limitations included Spastic Quadriplegia Cerebral Palsy (all four limbs, trunk and head control), with Bulbar Palsy (mouth and throat), Epilepsy, Hearing Loss, Visual Impairment (CVI), Dystonia, Severe Global Development Delays, PEG fed with Dysphagia (an unsafe swallow) and Failure to Thrive (difficulty gaining weight and below 3% for his age).

Bodhi is now two and a half and in spite of all the obstacles he has and is yet to face, our little boy is a fighter. Every day we are inspired by his strength and reminded how determined he is.

We believe that during our journey we have been fortunate enough to be supported by remarkable people that have become part of our community. We are so grateful to everyone who has reached out and we call you our #strengthinnumbers

The Bodhi J Niblett charitable fund (held by the Fremantle Foundation ABN: 23 992 104 836) has been established to support fundraising efforts for Bodhi’s ongoing therapy.