Maddie's story

My name is Megan and I am a proud mother of 2. When my daughter was born, she was 8 weeks premature as I was battling severe pre-eclampsia for the last two months of my pregnancy before she had to be cut out of my belly.

She was going extremely well and it looked as though she was going to come home before we thought. As she hit two weeks old, she caught a nasty bacterial infection from the special care nursery.

My daughter started having multiple seizures before she stopped breathing and had to be resuscitated. No one saw this coming at all except me when I explained to the midwife that morning that something was wrong because she wasn’t acting herself, and she replied with "oh, nahh I reckon she is having bowel movements". She didn’t end up getting a doctor like I asked her to.

With every antibiotic in her they were trying to keep her stable so she could be transferred to the women’s and children’s hospital in the neonatal unit/ intensive care and stayed in there for 53 days before we could take her home.

She was diagnosed with Meningitis, starting as an infection in her stomach then rapidly spreading all over her little body and up to the walls and inside her brain.

She was hooked up to every life support machine possible. They tried for weeks trying to find out the reason it happened but we got no answers because they killed the bug before they found out what it was.

The doctors did an MRI on her brain and found an extensive amount of brain damage and some cells already dead. We were told because of how severe the brain damage is, she will definitely not come out of this unscathed. She may suffer with things like she may not be able to move her limbs or know who her mum and dad are.

The doctors sat us down and we were asked to think about my daughter’s future and whether it was best to end her journey here. We decided to give her another chance.

But her poo tube collapsed and another MRI scan was done and they found more dead brain cells, the docs said its only going to keep dying until there’s none left. The questions popped up again, we made the horrific decision to let her be at peace.

We took her home to pass, on the second day I was worried she was in pain and was told to take her back to the hospital and they will assess her but on the way her hands went blue and she was unresponsive no matter what I did.

She regained consciousness when we got to the hospital thank God! But the docs told us that it was part of the dying process and it will happen again, all I can do is cuddle her and let her know how loved she is because she may not wake again.

It’s been 5 days since she has been home but the day is only getting closer and closer before she’s gone. I want to show her what this world I really made of with the small amount of time we have with her.

She is now 3 years old and has cerebral palsy, epilepsy and cortical visual impairment. But the most important thing is she is still here with us and living her best life she can. She will give anything a go and now is a proud sister to her 6-week old brother. :)