Hi there, I have shown your comment to my doctors and specialists, but have heard no feedback from them about it all.
We have written several letters to our health minister Tony Ryall. As has our local wondeful MP Clayton Cosgrove on our behalf demanding answers.
Tony has stated it is up to our local DHB to make these decisions, and down here there are not willing to support Inara and a rapid tube wean.
We have been fighting for a long time to get Inara some help and have gotten nowhere, but hopefully on our return from Graz we can help other families in similar circumstances once they see Inaras improvement.
Our doctors do not believe this is the best option for Inara. But have offered nothing as a substitute. So we have no other option and we leave for Austria in a couple of weeks.
I appreciate your feedback and telling your story, and I will try get in touch when we return, to see how your wee boy did throughout the program.
All useful info to gather and approach the government and DHB with.
Our goal is to make sure every other tubefed child has the opportunity to learn how to eat.
The Neonatal trust is backing us and will be working alongside our mission to help others and pay it forward:-)

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I fully understand the stress involved as I also have an ex-prem son (5) who was born severely ill @ 31 weeks with heart defects and a condition called hydrops fetalis which has a less than 5% survival rate. He somehow survived the first year of life also battling chronic lung disease, and in the process he became 100% dependant on a feeding tube (NG then G-tube). His physical problems resolved so there was no reason he couldn’t eat, but he was so traumatised by his hospital & feeding experiences that he would projectile vomit if food just touched his lip or even just by looking at it. In frustration and despair we also looked at going to the clinic mentioned above in Austria, as nothing was working. Due to the massive costs involved, we then looked at a tube wean at home with support from Waitakere Hospital in AKL. They decided to run a 3 week trial in-patient tube wean instead using methods from the Austrian clinic with my son and one other ex prem. Both weaned successfully after 3 weeks and they have sinced tube weaned others. Before having to raise huge amounts of $$ and the stress of travelling, i recommed approaching these guys first, they have been amazing. Let me know if you need more info.

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