Teeuw is watching Peppa Pig on his iPad, while mum, Emmy, sits next to him. He is content and looks up at Emmy every now and then as she speaks. They are comfortable in their room at The Royal Children’s Hospital (RCH), as if they were in their own lounge room. The RCH is like a second home.
Teeuw, now four years old, has down syndrome, as well as a condition called oesophageal atresia, meaning he was born missing part of his oesophagus. This means anything that is swallowed can travel into the lungs; eating and drinking is limited or not possible. Saliva can build up in the lungs, requiring drainage.
“He underwent surgery at one month of age in Adelaide, and spent five weeks in intensive care. During that time, he had four more operations, two of which were for Hirschsprung’s disease, which was also diagnosed in that time,” Emmy said.
The aim of these surgeries was to close the gap in his oesophagus, but the effects didn’t last.
“We were told that after surgery the tissue would heal itself – and it did – but he didn’t completely heal. After that he began feeding through a gastrostomy tube. He has respiratory problems and chronic lung disease because of the build up of fluid in his chest,” Emmy said.
After spending the majority of his first year of life in hospital, Teeuw was referred to the RCH to undergo surgery again to repair the leak in his oesophagus.
“We came to the RCH in 2012 and started seeing Dr Joe Crameri. More surgeries followed, which were tough for our family, as we are based in Adelaide and had to travel back and forth, spending a lot of time at Ronald McDonald House,” Emmy said.
After some time spent in the RCH, the leak in Teeuw’s oesophagus was quite small and he was finally able to try eating; his first experience with food.
“It was wonderful to introduce him to food,” Emmy said. “He loved it. He especially loves yoghurt. We really enjoy family time eating together.”
Teeuw and family went home and managed to enjoy a holiday before he became unwell again. Another leak was discovered during an x-ray, bringing the family back to the RCH for Teeuw to undergo yet another surgery. Teeuw recovered, leaving hospital with an improved, minor esophageal leak, and the family returned home for a well-earned break before their next check-up.
Their next appointment at the RCH was a special one.
“The leak was gone. It had healed itself. It was unexpected and we were completely over the moon,” Emmy said.
The future looks bright for little Teeuw, who is set to reach some big milestones in the near future.
“It’s a new life for him. He’s more active and enjoys playing, he will learn to eat more, talk and walk and go to day care and school. We’ll work on his development and look forward to him being busy with lots of kids’ stuff and less hospital stuff,” she said.