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Sep 04 2023
Lunch in the Heart of Sydney Friday 29th September 2023 This year the Heart Centre for Children and Kids Heart Research are coordinating our firs...

Rising Star Award

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We would like to congratulate Dr Gillian Blue from Kids Heart Research, Heart Centre for Children who was awarded the Rising Star Award at the 2021...

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...

Patient Story:

Ethan's heart journey


Ethan was born with a serious heart condition that required urgent surgery.  His Mum, Rachael, sent in Ethan's story in October 2012.

On 31 July 2012 we were elated, celebrating the safe arrival of our third child, a son we named Ethan. But less than 24 hours later our world was spiralling out of control. Ethan had started to turn blue, his oxygen saturation levels were low and they were unable to find femoral pulses. We were transferred to the John Hunter Hospital where the Cardiologist confirmed Ethan had major heart problems that would require surgery in order for him to survive. They couldn’t perform this surgery in Newcastle so we were put on a helicopter and flown to Westmead.

It was late when we arrived at the Grace Centre for Newborn Care at Westmead, but we were met by Dr Phil Roberts an amazing man I would quickly come to trust more than myself for all things regarding Ethan. He performed a scan, confirmed the diagnosis of the Cardiologist in Newcastle and explained that Ethan had Taussig-Bing Syndrome (Transposition of the Great Vessels, a VSD ) and Coarctation of the aortic arch. We were numb and exhausted. It was difficult to understand the information we were being given and to be honest, I didn’t care what Ethan had, I just wanted to know if they could fix him, how quickly they could fix him, and if he was going to be ok? Dr Roberts was kind and patient. He couldn’t give guarantees but I will never forget his words: “the odds are stacked in his favour”. We had hope.

The following morning Dr Roberts again explained Ethan’s condition to us. Ethan’s first surgery was scheduled for the next afternoon. We were introduced to one of Ethan’s future surgeons, the incredible Dr Yishay Orr who is a true gift to heart families. She explained that this thoracotomy was to fix the coarctation of the aorta. I looked at my tiny baby, covered in tubes and wires and I cried. Early the next morning we met with yet another wonderful doctor, Professor Richard Chard who would be performing the open heart surgery. He was confident, relaxed, honest, matter-of-fact and immediately put us at ease. He made us feel that things would be ok. We went back to our room processing what we had been told and not for the last time I started to panic. Ethan hadn’t really opened his eyes since his birth – what if he never did? I didn’t know what colour his eyes were. He hadn’t worn proper clothes yet, I didn’t have anything that was “his”. What if I never did? I hadn’t been able to hold more than his foot for 2 days. I cried until I was sick.

At just 3 days old Ethan had his first surgery which went perfectly. He recovered quickly and finally opened his blue eyes. I took about 100 photos! Three days later when he was 6 days old Ethan had open heart by-pass surgery. It was without doubt the longest 5 hours of our life. Finally the phone rang and it was Professor Chard. Things had gone well. Ethan was on his way back to PICU. As accustomed as we had become to seeing our baby hooked up to various pieces of equipment, the site of his bloated body, covered in tubes and drains receiving a blood transfusion and requiring external pacing was confronting. But he was alive and we were relieved.

Babies are so incredibly resilient and Ethan started to recover quickly. His heart rate settled into a normal rhythm and the pacing was no longer required. Four days after his surgery we were transferred to the ward. This was daunting as you come to rely on the comfort and security of a nurse at the end of your child’s bed but it was a step closer to taking our baby home. His brother and sister came down for the weekend to visit him and I was amazed to think that we would be coming home in just a couple of days.

On the Monday night, exactly one week after his surgery Ethan started to display signs that all was not well. By the Tuesday morning it was apparent that he was very sick. An infection was suspected. Blood tests were done and he was transferred back to PICU. For the first time since arriving at Westmead people looked concerned. We were terrified. Ethan had a severe infection that required emergency surgery to wash the area and would require further procedures to change the Vac dressing that was used. He would also need an extensive course of IV antibiotics over a period of 4-6 weeks. We would not be going home in a hurry, but at least we would be going home.

Life has to go on and with an extended stay ahead of us I stayed alone at Westmead with Ethan. This was at times lonely and stressful but I did meet some amazing people and heard some incredible stories. There is a camaraderie that exists on the ward among patients, carers and staff unique to the situation you find yourselves in and amongst the stress and anguish there were moments of great humour. The team on the ward were wonderfully supportive and took great care of us both. At home in Newcastle, with no family help available, my husband was left to fill the foreign role of stay-at-home mum to our two older children whilst still trying to run a business. Wonderful friends helped out where they could but tensions were high. The older children coped surprisingly well but didn’t understand why we couldn’t come home and didn’t feel that they had gained a brother, rather that they had lost their mother. There were many tear-filled phone calls. The strain was huge but we kept reminding ourselves it would be all worth it in the end.

And it was. On the 18th September, one day after Ethan’s 6th and final surgical procedure and 7 weeks after he was born, we were able to take our now healthy baby boy home.

Whilst it wasn’t the start to life we imagined for our son and the complications that arose after his surgery where unfortunate, we find ourselves grateful for so many things. Ethan’s condition was curable. He is now the proud owner of a normal functioning heart and can expect to live a full and active life. From the start we were gifted an amazing team and he was placed in the very best of hands and there is no greater comfort as parents than having total faith in the professionals looking after your child. I have nothing but admiration and gratitude for everyone involved in Ethan’s care.

Life at home has returned to normal remarkably quickly. Ethan has settled in beautifully and is an easy, content and happy baby whose biggest daily challenge is surviving the love being showered on him by his overly enthusiastic siblings. I find the days are going too fast and I wish I could slow them down as I try to savour every moment with him. His brother and sister like to help me bath him and call his scars his “scratch”. Given time, this is probably what they will look like. For me they will be a constant reminder of what is important in life and of the incredible gift we have been given.

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