Eliot

Eighteen-month-old Eliot has spent most of his short life in hospital after doctors diagnosed him with major aortopulmonary collateral arteries, which meant the arteries in his heart that supply blood to his lungs had not developed properly. At the same time, it was discovered that he also had severe tracheobronchomalacia, a rare condition that occurs when the walls of the airway particularly the trachea (windpipe) and bronchi are weak.

The cardiac diagnosis meant he needed open-heart surgery as soon as his little body was ready. So a month later, on 27th, August 2015 Eliot had his first major operation to repair his pulmonary vessels. The surgery was a success but his weakened airways let him down and doctors were unable to extubate him (remove his endotracheal tube). However, Eliot managed to overcome this and was eventually successfully extubated. Next, he was placed on high flow (and then low flow) oxygen therapy during the day and a snorkel mask at night to ventilate.

However, after a few weeks Eliot’s condition started to deteriorate. Further investigation showed that his tracheobronchomalacia was extensive – in fact it was one of the more severe cases his doctors had seen.

They recommended 24/7 ventilation on a BiPAP (bilevel positive airway pressure) machine, which is best delivered via a tracheostomy.

So in January 2016, Eliot got the ‘trachy’ his parents Caroline and Manuel were hoping to avoid.

“The recovery from the surgery was slow and we questioned whether we had made the right decision, but seeing his face (without a mask over it) for the first time in months and his development from that point to now has been worth it, “ Caroline said.

“Hospital staff said Eliot was one of the happiest babies they had known. He handled every obstacle and challenge with a big grin on his face. His character is so strong and resilient. Nothing fazes him – except if you try to wipe his face!”

“We and our friends are trachy and ventilator trained, something we had never planned on when he was first admitted. The training and requirement for carers did cause a bit of delay on our discharge, but it made us more the ready to be at home when the date finally arrived.

After being trained in home ventilation, Caroline, Manuel and big sister Mia were finally able to leave the intensive care unit and take Eliot home in September, 2016 – after 401 days in hospital!

“Eliot is doing well and spending his time playing, reading, pulling off his vent tubing, making us laugh, getting into mischief and learning to walk.”