Written by his mother.
When Ethan was born he weighed 4lb 5oz and due to feeding issues, he was transferred to the hospital’s special care baby unit.
As days progressed, doctors talked to us about his feeding and also the fact they could hear a heart murmur.
As a result, more tests would be needed.
Subsequently, Ethan was transferred to the heart investigations unit at Birmingham Children’s Hospital where he was reviewed by one of their leading cardiologists.
At this stage, I wasn’t overly concerned. I had known people with heart murmurs and they were fine. Plus, apart from the feeding issues, Ethan appeared well and alert.
However, as the examination progressed, it slowly began to dawn on me that all was not well. The cardiologist had noticed significant irregularities in the design – or as we liked to call it ‘plumbing’ – of Ethan’s heart.
Ethan was diagnosed with a congenital heart defect called Transposition of the Great Arteries.
This condition is where the connections to the main vessels feeding the body are reversed and therefore, oxygenated blood coming from the lungs does not get passed through the aorta, instead, it returns back into the lungs.
As a result, the blood circulating the body is not oxygenated. It is because of this that babies born with this condition often require surgery within hours of being born.
Ethan however, was different and had a number of back up systems helping his body to receive the oxygen it needed to survive. Crucially, this included a large hole (Ventricular Septal Defect) between the two bottom pumping chambers of his heart which was allowing varying degrees of oxygenated blood to seep through into the correct side of his heart and therefore, being pumped around the body.
As a result, with close monitoring, Ethan could continue without medical intervention until they felt necessary.
After four weeks in the special care unit, we were allowed to take Ethan home, and this is where our connection to the Birmingham Children’s Hospital really began.
Weekly oxygen level checks, feeding and weight monitoring became a way of life. As too did visits to the A&E dept when Ethan picked up viruses. Prone to coughs and colds turning into pneumonia, Ethan would often need week long stays in hospital to receive oxygen therapy and antibiotics.
But, Ethan’s life wasn’t all about his condition. We were determined that Ethan would lead a normal life and with his character, this was easy to do. Indeed, if you would have met him there was no real indication that Ethan has an underlying condition.
He went to music classes, nursery and loved listening to stories and anything to do with trains. Just after Ethan’s third birthday he underwent his first operation, a Rastelli procedure.
His recovery was rapid, surprising many of the medical staff. However, Ethan began to require oxygen and eight days after his operation, Ethan had two respiratory arrests followed by a cardiac arrest. Despite the best efforts of the medical team, Ethan died that night aged just three.
At no point did Ethan complain about what he went through. He tackled his challenges head on. Always smiling – always with what Ethan called his ‘happy face’.
He radiated joy.
Charismatic, cute, brave and funny. None of these really do him justice.
For me, Ethan was special.
And it is because of this that we are determined that our grief is turned into something positive.