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James Holems with her daughter Kitty
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Jane Holmes: Tube-feeding is the right choice for parents with disabled children

By Jane Holmes
February 25, 2013

Jane Holmes is chief executive of Wokingham-based charity Building for the Future which provides support and activities for disabled children.

She set up the charity after her daughter Kitty was born with severe cerebral palsy

When you have a baby, you feed it.

It's the first instinct you both have and as well as giving nourishment, it also creates a bond between care-giver and baby.

But what if your baby can't feed? Can't suck properly or co-ordinate a swallow?

Or if, as in my case, when you tried feeding her, you risked killing her.

Well the answer, of course, is you tube feed.

First by naso-gastric tube, then by gastrostomy, which is a plastic valve placed into a hole through the abdomen directly into the stomach.

In the hospital, you're encouraged to feed expressed breast milk down the tube.

To cuddle your baby while you're doing this, to cement the bond in as natural a way as possible.

Things change, though, when your baby reaches weaning age.

At that stage, you're prescribed formula milk, at great cost to the NHS, and told that this is a balanced diet and to feed that and that alone to your child for ever more.

In my opinion, the formula milk is vile.

Vanilla flavoured and consisting of a very high level of sugar and fat, it's not unlike melted Mr Whippy with the recommended daily dose of vitamins and essential nutrients thrown in.

So an increasing number of families decide to blend real food and syringe it down the gastrostomy tube instead which means that your child is getting a great diet.

It means you shop and cook for them, which gives you, as care-giver, a sense of empowerment and control, which can be seriously lacking when feeding formula.

You might think that all dietitians would be very encouraging, but they aren't.

In this area we're lucky as they're pretty supportive at the moment, but that wasn't always the case. And talking to other mums it certainly isn't the case in other areas.

Tube feeding real food saves the NHS money, is great for the bonding process and can provide the optimum nourishment for your child. So to all dietitians, please accept our choice.

It may not be for every family, but for those who want it, your support would be appreciated.

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Most recent user comments 2 of 2

Seldom does the NHS support things that will save them money. Even when the evidence is clear cut, they will still do what they want and follow “protocol” Diets are a classic. Prescribe a diet that has over a 90% failure rate rather than helping in better ways that will save them money in the long term. Would they prescribe drugs that fail to such a degree and in your case, prescribe a bowl of sugar and unnecessary fat? Alas, yes they would and do. You feeding your child a great diet deviates from the “normal” set down path which in turn means they have to actually do something. Well done you for standing up to the “system”

HK, bracknell
26/02/2013 at 17:04

Jane, do you fancy writing about the abuse of disabled parking bays by white van man, shop fitters etc. I am fed up of driving round Wokingham and Reading looking for a vacant bay only to find a delivery van/skip/construction workers vehicle parked without a badge. What is worse, as the consequences of their actions are virtually non existent (see a traffic warden anywhere near and and move) they will continue to do so. The consequences to the disabled are however much grater as you know only too well