Tube feeding traumatised our daughter

BONNIE LINTOTT
Last updated 14:00 09/06/2014
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INARA HERDMAN: Big smiles on oxygen
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GETTING BETTER: Inara's first eating birthday at 3 years old.
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FIGHTING: First cuddle at 21 days old.

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Two years of sleepless nights Tough to see baby in pain

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Our baby won't stop crying

When exhaustion is the norm Reflux robbed us of baby joy Baby could not eat or drink for a year Six months, covered in vomit Tube feeding traumatised our daughter Two years of sleepless nights Tough to see baby in pain

Our wee girl Inara Herdman was born via c-section almost a month early in September 2010, and survived a Severe Rightsided Diaphragmatic Hernia (CDH).

She had 5 percent chance of survival throughout the pregnancy and birth.

She overcame a major surgery to repair her diaphragm at 10 days old.

She spent a total of 62 days in Christchurch NICU.

While in hospital, Inara showed signs of reflux and was put on medication to try to help this, but it didn't really help her at all.

Unless she was held upright she would scream in pain all day, every day, and vomit all the time.

She would still cry in pain upright, but the pain was alleviated somewhat.

It was a full time job for me and my partner after getting home from hospital.

He had to have five months off work to help with Inara and our other three children.

Inara was fed via a nasogastric tube.

She had so much pain around her mouth from the constant vomiting that she would not even let you touch her face without throwing up.

At 4 months old, after no weight gain, and severe vomiting episodes, she had a Nissens Fundoplication, which is a procedure that creates a tie around the valve in the throat to prevent throwing up.

The intestines are used for this procedure, which meant her stomach had shrunken dramatically in size.

This was also when a gastrostomy was done to insert a feeding tube into her stomach, as long term nasogastric feeding isn't safe.

So she was then tube fed for 23 hours per day to try stretch to her stomach back out again.

She could not wind herself, so this had to be done through a venting tube in her stomach, sometimes 20 times a day to help her with associated pain.

But within six weeks of the surgery, she was projectile vomiting again.

The vomiting continued with many episodes of aspiration pneumonia.

We nearly lost her several times when she would turn blue after choking on her own vomit.

She was monitored through the night for the first 18 months of her life as we thought we may lose her.

Inara continued to be tube fed through a tummy peg for two and a half years of her life.

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Never eating or drinking, as she was so affected by the reflux that it caused her to have an oral aversion.

Anything near her mouth was traumatising to her.

We finally got her eating in March 2013 after taking her to Graz, Austria, to a feeding clinic specialising in tube dependency and weaning.

She learnt to eat thanks to many specialised therapists help.

After our traumatic tube weaning journey I started campaigning for change for all tube fed children in New Zealand, and helped form the "Tube Wean NZ" Campaign.

There are currently 630 families with children that are tube dependant in New Zealand.

There is no specific protocol in place to support them to eat. Some have ended up tube dependant due to early medical issues, some premature, and some will never eat or drink due to severe mental or physical handicap.

A percentage of these children end up tube fed due to severe reflux like our Inara. But almost a third of these children could be eating if the right supports were in place.

This campaign is in the Parliamentary process after over 4000 signatures were passed over for changes to be made to support families.

To all you mums and dads out there, you are not alone, and help is on its way.

Having a reflux child is such a helpless predicament, watching them in pain for so long.

I know not everyone's journey is the same, but you feel so alone while going through it, and supporting one another is what will help you get through the tough times.

It's not forever, and there are things that can help.

Inara is now a happy and healthy wee 3-year-old girl who will have ongoing medical issues, but she is eating, with no more reflux thankfully.

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