Benjamin’s Story


Benjamin, Heart Kid 

Written by Carly Smith about Heart Kid Benjamin

Just wanted to let you know our little Bubbas CHD story, hopefully it will help others in similar situations to realise that a CHD diagnosis doesn’t have to be as truly frightening as it seems, that light can be found in the most dark & scary of places.

We found out in our 20 week scan that our beautiful baby had 3 CHD’s- transposition of the greater arteries, a ventricular septal defect & an extra vein (vena cava). This diagnosis shocked & initially deeply saddened us, the pregnancy we had hoped for was overshadowed by our worry for our Baby’s condition & how we as a family were going to cope with everything on the hard road ahead.

When I was pregnant people always asked “what do you want” and I always replied “a healthy baby”, when we found out about Benjamin’s diagnosis I changed it to “a healthy baby after open heart surgery”.

Shared care & delivery planning for Westmead was daunting for us, being so far from home (we live 2.5 hours away) & the uncertainty of how our little man (& indeed us too) were going to cope with the huge hurdles ahead, but one of the main things that helped us overcome this was to meet the amazing team of Doctors, Nurses & Allied Health at Westmead Childrens Hospital who were going to care for our family & our little man, & the staff at Ronald McDonald House who gave us a truly beautiful home away from home.

Benjamin was born & a mere 3 days in he had his open heart surgery. This was by far the most intense experience we have had as a family so far, but we would not have been able to get through without the support of our family & the incredible staff at Westmead Children’s Hospital, Sydney.

After a short NICU & PICU stay he was transferred to the ward & within 2.5 weeks we were discharged from hospital & able to take home our amazingly resilient little fighter. It’s incredible what you think you can’t face, situations you can’t imagine until you’re in them, it builds your love, your resilience & your strength, and your ability to find light in the most darkest of places.

I will treasure his heart scars because it reminds me of the struggles we have been through as a family, how strong we are together because of it & how much love we continue to have for each other. One of the social workers told me something that will stay with me forever, when I was scared about falling apart throughout it all, that “caring is an incredible strength too”.

Our little Miracle man is now 18 months old, incredibly happy & thriving with yearly cardiology checkups!

He is our life, our light and our Miracle Man and we are so blessed to have our beautiful Benjamin.


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