Video – Little Braveheart
Ethan was born with a 3,9 by 4,59 cm tumour in his heart.
The excitement of the birth of their son, Ethan, on 16 September last year soon changed into a nightmare for the Smith family.
Ethan was born with a 3,9 by 4,59 cm tumour in his heart.
After birth, Ethan battled to breathe and spent the first 10 days of his life in ICU before his parents, Christelle and Yevette, could take him home for the first time.
Their joy lasted only three weeks as they noticed that he was not breathing normally.
He was again admitted to hospital and tested for a possible lung infection, but an X-ray showed that his heart was bigger than normal.
Another X-ray the next day showed that his heart was even bigger, with the presence of a murmur.
Ethan had to be transferred to the Unitas Hospital in Pretoria to see a paediatric cardiologist, where he was diagnosed with a tumour in his heart which had to be removed as soon as possible.
But their medical aid did not cover any costs at Unitas and Ethan had to be transferred to Sunninghill Hospital in a hurry.
” My world crashed around me; we weren’t prepared for this,” said Yevette.
They started a prayer group, with people from around the world joining in.
On 2 November, Ethan underwent open-heart surgery during which doctors discovered that the tumour was connected to the posterior wall of the left ventricle.
Although the tumour, known as a fibroid, is benign, it is life-threatening, as it affects the baby’s heart and lung functions and is impossible to remove as it has grown as part of his heart.
Three days later he underwent by-pass surgery lasting almost six hours so that his heart can function on one ventricle.
While he was still in ICU two weeks after his surgery, Ethan’s lungs collapsed, which caused him to go into cardiac arrest.
Christelle says all they did was pray.
“The whole world prayed with us,” Ethan’s lung expanded miraculously and he was able to breathe on his own.
Ethan lost the ability to suckle due to being incubated and a stomach feeding tube would be the only option.
“But by the grace of God and the power of prayer this was averted.”
28 December was a joyous day for the Smith family: after the two-month ordeal they finally went home.
A follow-up echocardiogram on his heart in January showed that the tumour had remained the same size.
Even doctors at the Boston University Medical Centre in the USA do not know what course of
action to take, as there is no record in any known medical literature of a
fibroid tumour growing in the heart.
At this stage, nobody knows if the tumour is going to shrink or keep growing with his heart.
Ethan is four months old now and his next appointment is next month.
Unsure about what the future holds, Christelle and Yevette are taking it one day at a time.
Medical costs, financial strain and endless trips for follow-up doctor visits aside, for now they are enjoying every little milestone and progress parents of a four-month-old son experience.
And they pray for answers every day, as the one thing they have learned these past few months is the power of prayer.
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