Elana’s Story


Elana, Heart Kid 

At 24 weeks gestation our baby girl was diagnosed with Congenital heart disease and on the 28th of September 2016 Elana Grace was delivered via caesarean weighing 2.9kg. We knew she had a fight ahead of her but didn’t expect how great. She was rushed away without me even seeing her face. Being the only mother in your ward without a baby was heartbreaking, I had never cried so much.

Elana stayed in the NICU at the Monash Hospital. At 1 week old she was transferred to the Royal Children’s for her first surgery, Imagine placing your newborn baby into the hands of strangers and trusting them to save her life. After 7 long hours we got the call she was still fighting! Unfortunately she was miss diagnosed at birth, her diagnosis was a lot more complex than they first thought, She was re diagnosed with a hypoplastic right heart, tetralogy of fallot, pulmonary atresia and Vsds.

The surgery didn’t go as well as they had hoped there were so many complications. She developed a blood clot, picked up countless infections,  her kidneys were failing, her fluid losses were astounding and her lungs just weren’t strong enough, I will never forget the day the doctor sat us down and discussed the likely hood of our baby girl dying. She kept going into cardiac failure. We hadn’t held her in 3 weeks.

Elana eventually went into theatre 2 more times. The last surgery worked! For a long time there she would take 1 step forward and 2 steps back then finally she kept going forward! Elana was in PICU for 9 weeks before moving to the ward she then spent another 3 weeks at different hospitals before coming home on the 23rd of December Just in time for christmas!!

Although we aren’t living in the hospital anymore, we still spend a lot of time in them! We travel an 8 hour round trip for her routine appointments. Her cardiologist expects Elana will need her next open heart surgery around 2 years of age.  We know Elanas heart journey will be forever ongoing, but we are so happy to have our family together again, Elana adores her brother and he adores her just as much and that’s what we focus on.


Sign up to receive monthly updates with the latest news, CoHD information and resources, and upcoming events and campaigns across the HeartKids community.

We use cookies to improve your experience of using this website. By continuing to use this website you have consented to using cookies placed on your computer. To find out more please refer to our Privacy Policy.

This will close in 0 seconds