Jane Holmes: Tube-feeding is the right choice for parents with disabled childrenBy 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.