Aurelia, our beautiful daughter born December 11th 2008 in Columbia South Carolina.... words are insufficient.... 


Aurelia was born on the 11th December 2008. Following a long water labour she managed to sneak out quick just to panic the nurses. It was truly magical.  Wide eyed, beautiful  and perfect, we took her home that morning and she amused the family with her insatiable appetite and enormous, captivating, dark blue eyes…

At 4 days old I saw her have a brief seizure.  It was subtle and only lasted for a few seconds.  We called the paediatrician who sent us to the Emergency Department.  The Emergency Department sent us home with a diagnosis of probable reflux (heartburn).  I protested, and my husband explained that I was an emergency doctor with substantial experience of working in neonatal intensive care, but they did not seem to listen. I fought with them through the night, and finally resorted to recording one of her episodes on video and taking it to our paediatrician.  He immediately arranged a hospital bed and I watched her deteriorate in front of my eyes through the day.  I had to beg for an intensive care bed as I could tell that she would be dead before the next morning if the doctors there did not start taking her condition seriously; they were forced to oblige, and following a lumbar puncture on the unit, a diagnosis of bacterial meningitis was made.

She continued to seize, and fought for her life for 9 days in intensive care.  We were discharged late on Christmas Eve, and it was wonderful that her grandparents got to finally hold her with less of the wires and machines, although she had a permanent intravenous catheter for administering IV antibiotics and anticonvulsants, which we did at home.

Unfortunately her seizures increased again and she was readmitted to intensive care a few days later. Following several days of enduring more incompetent physicians torturing our child, we decided to transfer her to Charleston.

I write now from a peculiar retro child’s bedroom, high up and overlooking a colourful indoor courtyard full of enormous, floating magical creatures.  This unit, in an old building has an underwater theme and 70’s style, extremely reminiscent of one of the portals from ‘Lost’ (for those of you who watch it).  Eli has been both charming and baffling an array of soft southern accented doctors with her continued episodes.  Although her initial seizures were clear on EEG, the episodes that she is having now display a different electrical quality.  Although she appears awake when they happen, the electrical activity now is more similar to certain sleep stages during them.  The frequency and duration is variable, and my diagnosis as an experienced emergency physician is that her brain is clearly being intermittently abducted by fairies.

Today we sit here whilst tests continue, but she is so much better. She is gaining weight everyday and is proving to have evolutionary feeding techniques of a velociraptor crossed with a dyson.  She bathes with me and loves the water like her mummy.  I can’t stop watching her, and she is getting stronger every day.  She is now one month old, and we can’t wait to start normal life at home with her away from the needles and alarms… we have decided never to enter hospital… ever again… which could prove challenging to me career wise….

Eli’s bravery has humbled us. We don’t know what the future holds… 20% of children with her diagnosis die even with treatment and of the remaining survivors, 50% will have neurological deficit.  Andrew is watching her keenly to see which ‘special superpower’ she will develop as she grows. We are thinking the pixies should certainly bestow her with some gift in return for all her time with them. We will keep you posted…

So many people have written to us on facebook and sent messages via family or phone, thank you so much.  Something saved her life when all the odds were against her... and it wasn’t the doctors in Columbia…

Thank you all so much

XXx

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