Merryn and I have been involved in the Australian Community of Child Photographers for well over three years now.
This year the ACOCP’s tireless volunteers have organised a wonderful exhibition called ‘Heartfelt’. The exhibition is a selection of our photographs designed to raise awareness of the service we provide and to tell the stories of courage, heartbreak and hope of the everyday people with whom we are priviledged to work.
Three images which I submitted for consideration in the ACOCP exhibition were accepted, and will be mounted and hung in a ’storyboard’ format along with the child’s story. As the exhibition is being held in Sydney, I wanted to share the images here with our South Australian families as well, and to share the stories that go with the images.
___________________________________________________________________________
CODY. AND HIS STORY
Cody Anakin Porteous
Born 12th of May 2008
Hypoplastic Left Heart Syndrome
Cody was born into his daddies hands at home in our bath at 4.15am on Monday the 12th of May 2008. We had a beautiful unassisted homebirth. When he was four days old Cody turned blue, was helicoptered to the Womens and Childrens Hospital and diagnosed with Hypoplastic Left Heart Syndrome. This is where the left side of the heart does not form properly. Cody’s condition was not picked up throughout the pregnancy under ultrasound like most HLHS cases are. Children with HLHS have to have three stages of reconstructive surgery and then eventually a heart transplant, they are very unstable. At six days old Cody was flown to Royal Melbourne Childrens Hospital and on day seven he endured his first nine hour major open heart surgery. This was to be the first of many, within two weeks he had had 10 surgeries ranging from minor to major. Codys chest was left open for two weeks and he was on ECMO which is a heart/lung bypass machine. Cody spent eight weeks in ICU when we were given the devastating news that Cody had suffered severe brain ischemia, which meant that he was left with severe brain damage, likely due to the machine which kept him alive for the first few weeks. He had also suffered left vocal cord palsy, so he had no voice. The surgeries which were supposed to save him had irreversibly damaged him. At this time we decided that we would take our baby home for palliative care. When Cody was 3 months old we finally took him back home to live out the rest of his short life. Telling our 5, 3 and 1 year old that there brother was coming home to die was yet another difficult task, but one that had to be done. There were many questions and we answered them as best we could. We just knew that we needed to be a family at home and give Cody the best life possible until his passing. The surgeons were unsure exactly how long Cody would or could last without his second stage operation, but they felt 9 months would be the maximum. We were told that even if they tried another operation he probably wouldn’t live through it as he was not strong enough. All these life ending decisions surrounding such a little life, but such a loved life.
Cody has since endured many challenges, every day is so unsure. But what he has had is a family which loves him immensely and a little extra time with his sister and brothers. Photos have played an important role in our lives, they are a great way of remembering and celebrating his life. We have tried to make everything a great memory for our whole family. Cody has just celebrated his first birthday, one amazing and unexpected year. He is such a little fighter, and a beautiful little character. His smile is enchanting and he has bought joy to our lives if only for a short period of time. Cody is one remarkable little boy who has touched us in so many different ways and who we will love for eternity. – Cody’s mum.
___________________________________________________________________________
NIAMH. AND HER STORY.
Niamh was born at 23 weeks. She weighted just 570 grams.
She was given a 5% chance of survival.
This photograph was taken when she was 2 weeks old, and was the first time her mother had held her entire body.
She is now a happy and healthy 1 year old.
Niamh’s wonderful family have been keeping a blog of her life from a few days after she was born. Her story is amazing.
___________________________________________________________________________
The exhibition is being held from the 22nd June – 3rd July at MLC Gallery, 449 Harris Street, ULTIMO NSW and is open from Monday to Friday 11am to 6pm & Saturday 12 to 4pm.
Please visit the official website and support our sponsors.
Merryn and I are flying to Sydney on the 23rd June to attend the ACOCP workshops and AGM, as well to to attend the Heartfelt Exhibition opening and … of course … visit PMA while we are there! …
The ACOCP would also like to announce a wonderful new website, so check it out!
We have a HEAP of work to do before we leave for Sydney, but we’ll try to touch base with a few recent sneak peeks before we head off!
____________________________________
“Laugh as much as you breathe, and love as long as you live … “
…
…. and the chocolate eggs and marshmallows from Great-Grandpop! …
