Help Tenaya Fight Congenital Heart Disease

Hello everyone, I am writing this story on behalf of the bravest little girl who deserves the best chance and quality of life. As a close friend to her parents, Bella and Mark, I have seen and felt the mountain top highs and the lowest of valleys that no child should suffer. This little girl has a smile so bright, you would never expect the challenges she has faced at such a young age. This story is about Tenaya and her ongoing fight for life.

Tenaya was diagnosed with CCTGA (Congenitally Corrected Transpositions of the Great Arteries) at 20 weeks gestation. The specialists said that she needed to survive until 33 weeks gestation to be safe, otherwise there was not much else they could do.

At 36 weeks and 7 days, upon examination at the hospital, it was discovered that Tenaya had a significantly lower heart rate of 40bpm instead of 160bpm the average newborn should have.

Where most babies are settling at home surrounded by loved ones, Tenaya was flown to Melbourne by Medstar to have her first open chest surgery at just 7 days old. They successfully put a band around her pulmonary artery and she received her first pacemaker.

This was only the beginning of a long journey for Tenaya.

Her next scheduled surgery was delayed five months due to COVID-19. She underwent major open heart surgery on the 30th and 31st of March 2022. Her little heart was reconstructed to give her a better chance to live. With the heartbreak of COVID-19 travel and medical restrictions impacting her parents, the joy of a successful surgery and recovery replaced all anxiety and fear as it was deemed successful.

Just seven months into her recovery, some thing was not quite right…

Her parents quickly noticed that the bubbly little girl they knew was different. Instead, Tenaya was sleeping all the time, profusely sweating, refusing to eat and turning shades of blue. Cardiologists decided that she immediately needed surgery as her heart had not recovered as they would have expected.

She was admitted to the Women’s and Children’s Hospital in Adelaide, South Australia before being flown to the Royal Children’s Hospital in Melbourne, Victoria.

Tenaya has such a rare case that cardiologists, general surgeons, and specialists in this field from around the world had flown overseas to examine and deliberate on Tenaya’s heart condition. She was given three options:

1. Tenaya would receive a new pacemaker to resynchronise her heart to beat in rhythm,

2. Tenaya would receive a heart transplant (which is unfortunately not time sensitive and high risk), or

3. Tenaya would receive a VAD (an exterior heart which poses a set of different high risks)

Last month on the 30th of November, Tenaya had her third heart surgery and it was deemed successful as a new pacemaker was received and new wires were installed. She was almost home…

Today as she underwent general anaesthesia for routine blood tests, her heart stopped beating for six minutes. For six minutes she received CPR and for six minutes, her family experienced the darkest paralysing fear any parent could feel. She fought so hard to come back to this world and is still fighting now in ICU.

For Bella and Mark to be with their little girl, they need to drive four hours from Whyalla, SA to Adelaide, SA and then fly interstate to Melbourne, Victoria. Bella is a full-time photographer dedicated to capturing her community and volunteers for HeartFelt, an organisation giving memories to families who have experienced stillbirth or have children with serious or life threatening illness. Mark is a shift worker making ends meet whenever and wherever he can for the sake of his family. Between the two of them and their oldest son who has ADHD and ASD needs, bills, a mortgage, and Bella’s ongoing treatment for Cystic Fibrosis, the last thing this family needs is the financial burden of not being able to hold Tenaya when she needs them most.

Tenaya spent her second birthday in hospital instead of a party at home surrounded by family and friends singing to her around a cake. She will now be spending Christmas in hospital away from her family and home.

Just as the smallest prayers are heard, any contribution, great or small is deeply appreciated.

Please keep Tenaya in your heart, as she fights for hers.