‘The baby who failed palliative care’

Is what the nurses called this little boy.

I don’t blog or usually write about the sessions I do for the ACOCP but this one is close to my heart and it is a story that I think needs to be told. The ACOCP is an organisation of child photographers throughout Australia who have come together to give the gift of photographic memories to families which have experienced stillbirths, premature and ill infants as well as children with serious and terminal illnesses.  It is a charity organisation and the reason behind this blog post is to also raise awareness for this charity. You can visit their website here: http://www.acocp.org.au/

Baby Alex was my very first shoot for the ACOCP, very nerve wracking as this was something I had never done before and didn’t know how I would handle the situation emotionally.  Alex’s parents Natasha and Michael were lovely and baby Alex was born perfect in everyway……. except for his little heart.  We got through the session with some beautiful memories of baby Alex which I knew would be treasured in months and years to come on their darkest days.

Fast forward a year, I always wondered about this couple and baby Alex and what happened and how long they had him for, not something you can pick up the phone and ask. Then just recently a nurse from the Mater rang me to ask if i still had the parents contact details and of course  I asked about baby Alex and to my amazement and sheer delight they told me he survived and had just celebrated his first birthday and would live to see many more.  So to celebrate this I had to see them again and capture some memories to mark this very special occasion. It was so lovely to seeing this little boy running around and enjoying life just like any other normal toddler. Michael and Natasha often send me updates via videos and pictures of little Alex and I know we will definitely keep in touch.  It has been a very hard year for them and they were kind enough to write about their experience, here is their story:

A rough year

After many happy years as a young married couple, there were stirrings within us, quiet at first, that began to surface in our conversations about our hopes and plans for the future. For the first time, we began talking about children of our own, a notion that had been foreign to us as we forged careers, accumulated property and other things that would see us through to our golden years. It started as a feeling of something missing, a desire to give entirely of ourselves and to love another and to see them safely through life’s amazing journey.

We learned we were pregnant in November 2008, and were ecstatic! We were on our way!

Our friends and families had had fairly uneventful pregnancies and births, and we travelled along under the same assumption until the 18 week morphology scan. There was just a little anomaly the doctor needed a closer look at, so we were referred to the Mater’s Cardiology Department. Still, we felt it wasn’t anything serious, just the doctor being cautious.

We could barely speak, nor could we hear much except the words “hypoplastic left heart”, “small ventricle”, “surgery” floating about our heads. The news was bad- our baby had a congenital heart defect that may or may not be repairable after birth. All we could do in the meantime was to keep monitoring the baby’s growth, and hope everything came out alright. It is difficult to drive and cry at the same time.

This set the theme for the entire pregnancy; unsure if our son, Alexander, would be able to improve prior to birth, and whether we could do anything for him when he was born.

He was born at almost full term, completely normal in every other way, and absolutely beautiful. There were tears of joy, tinged with great fear and uncertainty. He was immediately taken to the Intensive Care Nursery to be examined again to reveal the true nature of his condition. The nurses there are the most wonderful people, and were of enormous help and comfort to us.

Alex was on a feeding line, and as well as being hooked up to the monitors, he was receiving Prostin, which would keep his ductis open for longer than normal, which would assist in the tests.

The prognosis was referred to the Cardiac Unit in Melbourne, which confirmed the worst.

We were going to take Alex off Prostin, as it is only a temporary measure anyway, and take him home with us, to make him as comfortable as he could be, before his little heart was unable to work anymore. At least he would die at home in our arms, instead of hooked up to a machine.

It was the most appalling situation- everything else about him was fine, just one tiny part was not right, which would see him leave us within one week to four months, or so the prognosis went. We couldn’t believe that the tears and the pain would ever stop.

We learned of Jenny’s generosity through one of the nurses. We were offered a sitting with Alex to preserve the memories we had of him. This was a beautiful gesture that brought some light to our otherwise dark circumstances.

The pictures were taken in our room on the very day Alex was taken off Prostin. We were informed that the closure of the ductis (which is required to occur for every newborn) may accelerate his deterioration, so we were understandably anxious- scared, actually. The pictures we received from Jenny were fantastic. They captured a beautiful and tragic moment in our lives, which still cause us to draw breath when we look at them.

After this, we went home to prepare Alex and ourselves for the worst thing to ever happen to a family. The rounds of Blue Nurses and doctor visits seemed never ending; however this meant that Alex was still holding on.

After five months, we returned to the Cardiologist to confirm whether Alex was still terminal, or if something had improved. ECG and catheter test were performed. This time, word such as “improved”, “grown”, “future” were swimming through our heads as we were given the best news- his ventricle had grown on its own, sufficient to allow his heart to do its job. Through tears (again) we let everyone know before we were even out of the waiting room, with sincere congratulations from all doctors and nurses involved.

Alex celebrated his birthday last August, and is now 15 months. There may be requirement to repair his narrowed aorta, but not at present- we’ll take care of that if and when it presents. Alex is the epitome of a happy little toddler, and very much the light of our lives. He walks, can almost run and smiles all the time and is still the most beautiful boy we have ever seen.

We are all extremely lucky to have enjoyed this outcome; it is rare to happen this way.

We were again fortunate to have another sitting with Jenny a year after Alex’s first; something we all thought would never be possible. It was a wonderful day, in a wonderful setting with the kind hearted and amazing Jenny Ruddle.

A rough year with the best outcome.

Michael and Natasha Jones

  • Wow, what an amazing story. How wonderful!ReplyCancel

  • Karla

    So beautiful Jenny – such a little miracle.ReplyCancel

  • You’re such an amazing person (and friend) Jen. I loved looking through these pictures and reading their story. You’ll always have a connection to this family through what you’ve given them. (:ReplyCancel

  • Thanks Jana & Karla.
    Leanne lovely words my friend & thank you XXReplyCancel

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