Mariah’s story

Mariah was born with Treacher Collins Syndrome, a rare congenital disorder that is characterised by various craniofacial deformities.

Due to this condition, Mariah was born with a completely blocked nose and a small jaw that trapped any air that entered through her mouth. Due to her severe breathing difficulties, doctors at Princess Margaret Hospital had to put in a guedel airway device and Mariah was hooked up to a ventilator to keep her breathing before doctors were able to perform a tracheotomy two weeks after her birth.

Mariah underwent a significant Jaw Distraction operation when she was only seven months old with the hopes of losing the tracheostomy. Mariah’s mum Emma explained that it was a very tense process.

“Carl and I were exceedingly nervous and scared, but also a tiny bit excited about the outcome of this operation.

“The day came and went and we suffered the most terrible twenty days post-operation, having to turn screws behind Mariah’s little ears each day and night. Each turn grew her jaw half a millimetre. It was a tough time for us but we managed it- our little girl being the bravest of us all.”

Emma and Mariah

Emma with tiny Mariah in the Neonatal Intensive Care Unit at PMH.

A week and a half after the operation, Mariah was reintroduced to feeding from a bottle. She had not drunk from a bottle for nearly three months- being fed entirely via a nasal-gastric tube. The success of the jaw operation meant that not only was Mariah able to increasingly drink from a bottle but also that she could swallow solids.

“On 4 October, I enthusiastically pulled Mariah’s nasal-gastric tube out. I had tears of joy because for eight and half months she had been fed mainly by the tube. Things were beginning to feel a bit more normal for us all,” explained Emma.

Alongside her jaw healing, Mariah was consistently developing through being able to roll, sit up and crawl.

The next big procedure was on the 11 October with the aim being to see if Mariah’s tracheostomy could be removed. The scope had mixed results and Mariah’s family were given the discouraging news that the tracheostomy needed to stay however on the positive side her nasal passages were remained unblocked.

Mariah spent much of her first year of life in and out of Princess Margaret Hospital, undergoing 12 surgeries and 14 general anaesthetics, most of them to unblock her nasal passage and adjust her tiny jaw. Emma and Carl were overjoyed when they celebrated her first birthday at home with a Teddy Bears Picnic.

 

“Thanks to the support of Princess Margaret Hospital and the quick thinking doctors and ventilation machines that kept Mariah breathing throughout those first few weeks, Mariah is now doing extremely well and loves spending time one day a week with her friends at Princess Margaret Hospital’s child care centre,” explained Emma.

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