Welcome to the Life of Matilda

our extraordinary heart kiddo

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Matilda was born at 35 weeks due to severe growth restriction, following birth it was discovered that she has a critical congenital heart defect, Tetralogy of Fallot. Further she has a soft cleft palate and transient hearing loss both requiring further surgery, due to the prematurity and complications of surgeries she is also experiencing developmental delay, with genetic testing ongoing. 

 

She underwent her first open heart surgery on 16 December 2021 for a full repair of her Tetraology of Fallot at Perth Children’s Hospital following tet spells. Complications following the surgery meant that she entered a period of low cardiac output and her bowel was perforated, with two thirds removed a fortnight later she now has an ileostomy. 

 

We wanted to share Matilda’s story to raise awareness to congenital heart disease and prematurity, now we also share a story of a warrior who is so small but yet so full of courage to hopefully give other families hope.  

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Behind Life of Matilda

Amelia lives in the south east of Western Australia in the coastal town of Esperance with her daughter Matilda, and their two Australian Koolies Blaze and Felix. Amelia is passionate about sharing Matilda's story to raise awareness of the impact of having a child with a critical illness, encouraging parents to advocate for their children in the system and normalising the expectations of motherhood and womanhood in the modern age.