NZ Woman's Weekly

‘My baby won’t eat’

If little Inara Herdman needs to eat, it’s not her mother she turns to – it’s a tube feeding machine she’s been hooked up to since the day she was born. Inara’s organs didn’t develop properly in the womb and she was given just a five percent chance of survival.

Miraculously, she has survived, but you could hardly say that she’s thrived. She was born prematurely with half a diaphragm and her liver, bowel and intestines in her chest cavity, crushing her heart and lungs and requiring a series of life-saving operations. “My first ever quick cuddle was on day 21 of her life,” says Inara’s mother Bonnie Lintott (32).

Inara spent so long in intensive care she became psychologically dependent on being fed goats’ milk through a feeding tube, even though there is no longer any physical reason why she can’t eat. At two years old, she weighs 10kg – the same weight Inara’s older sister was at five months.

Inara attached to her feeding machine

Although she no longer requires it, Inara has become attached to her feeding machine.

“She’s just skin and bones,” her mum sighs. “She hasn’t gained weight for a long time.” She tires easily, dragging the feeding machine and pole around with her, which is plugged into a peg in her stomach for nine hours a day.

“If she’s hungry, she’ll go up to the machine,” Bonnie sighs. “We’ve tried everything from pate to chocolate, but as soon as she starts to swallow she gets the gagging reflex.”

Without being taught how to eat, Inara faces an uncertain future, but there is hope she can be taught to eat at a special clinic in Austria. Her family and the Neonatal Trust are raising $65,000 to send Inara to the NoTube Clinic in Graz, Austria next month, which has a 96% success rate.

“The clinic uses several different methods such as intensive physiotherapy to build up the muscles in their mouth and jaw,” Bonnie explains. The doctors first identified a problem with Inara’s development in the womb at Bonnie’s 12-week scan and she was given the choice to terminate her pregnancy – but Bonnie and her partner, Ryan Herdman, ruled it out.

Inara has brought the family so much joy, but her health issues haven’t been easy and Bonnie looks forward to the day when her daughter will turn to her when she’s hungry. “I don’t want her to be tube fed for the rest of her life. We all deserve the right to eat,” she says.

Donations are welcome to account number 03-0674-0449488-00

2 Responses to “‘My baby won’t eat’”

  1. inarasmum Jan 23 2013, 4:07pm

    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:-)

  2. ktstu Jan 6 2013, 10:06pm

    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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