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Team Harley - City2Surf 2017

Jun 27 2017
Mum Danielle puts it beautifully: "Why we started Team Harley: To raise awareness for Congenital Heart Disease in memory of our amazing...

Halor's story

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Patient Story:

Terri-Anna's heart journey

Terri-Anna's mum, Jackie, sent us this story in 2009, about her little girl's challenging journey.

The joy of finding out we were pregnant changed to tears when we discovered our unborn baby had complex congenital heart disease. At only 21 days old, Terri-Anna underwent open heart surgery. This was only the first of three open heart procedures our little girl needed between birth and the age of 3. Thanks to the expertise of the Heart Centre for Children staff, she pulled through all three surgeries with the amazing resilience that so many heart kids have. Thank you Dr Winlaw, Dr Cooper, and all the doctors and nurses. You are truly amazing.

Finding out we were pregnant made us so happy. Everything was going well until our 20 week ultrasound that showed a problem with our baby girl’s heart. Hearing the news brought me to tears.

An appointment was made for us with the wonderful Cardiologist Dr Stephen Cooper. He advised us that our baby had Complex Congenital Heart Disease. We now understand that her conditions were Tricuspid Atresia, Double Inlet Left Ventricle, Transposition of the Great Arteries, Ventricular Septal Defect and Sub Aortic Stenosis. The tears started again.

On the 12th of October 2006 Terri-Anna was delivered by Caesarean Section at Westmead Hospital and taken directly to Grace Nursery High Dependency Unit at The Children’s Hospital at Westmead. She was monitored for 10 days then sent home to gain weight for her first surgery.

Only 11 days later, Terri-Anna underwent a pulmonary banding operation to reduce the raised blood flow to her lungs that was getting worse day by day. The 3 hour surgery was performed by Dr David Winlaw – a miracle worker who we have the highest respect for. After the operation, seeing our tiny baby girl with all those tubes and wires in Intensive Care, we broke down in tears. But all I could think was this had to be done to save her.

The resilience of heart kids is so amazing. Eight days of recovery and we were home. The pulmonary banding made such a difference to her breathing, eating and sleeping. She was like any other little baby.

At 10 months, Terri-Anna was admitted for her second open heart surgery. Taking her to the theatre and having to leave her there was the hardest for me. We were given a beeper to tell us when Terri-Anna’s operation was complete. The 6 hours we waited felt like days. Finally, it beeped.

Seeing Terri-Anna in ICU this time was so much harder. I wished it could have been me laying there so she did not have to go through this. Things were not going as planned. Her heart rate dropped and her blood pressure was too high so she was put on a temporary pacemaker and kept in an induced coma for 5 days to let her heart rest. After 2 weeks of care, Terri-Anna was discharged. At home she was like any other little girl. She laughed, played, and was very cheeky.

The time then came for her third and hopefully final surgery, the completion Fontan. Terri-Anna was 3 years old. Going through the routine was no easier this time around. The tears and the helpless feeling were the same. When the beeper went off after what felt like days of waiting my heart was racing but I felt like I could breathe again. Dr Winlaw spoke with us about the operation. The way he explained it and how calm he was made us know that Terri-Anna was in the best hands and that all would be ok.

This time her recovery was really fast. Terri-Anna was extubated in 5 hours and her stay in intensive care was only 2 days. She was then cared for in the Edgar Stephen Ward, where we made great new friends and the nurses were amazing.

Teri-Anna is doing really well. She shows me her beautiful smile that melts my heart. My husband and I have raised about $15,000 and plan to raise a lot more to help The Heart Centre for Children in any way we can. It’s the least we can do for all they have done for us and our little girl.

We thank you all, Dr Winlaw, Dr Cooper, and all the doctors and nurses. You are truly amazing.

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