Maria, thanks for the link - I'm always interested to see the cleft material out there and it is certainly improving compared to six years ago when my daughter was born.

What I need at the moment though is specifically concerned with nasal gastric tubes. Unfortunately I have heard of quite a few cases in the last couple of years of babies born with a cleft lip and palate who, instead of being fed orally, are fed via a nasal gastric tube - without even trying to feed the baby orally. This results in days, weeks, and even a month of hospitalisation. Maddening when you know that nasal gastric tube feeding isn't necessary.

So my question is;

Shouldn't there be some kind of protocol in a hospital to regulate the decision to use a nasal gastric tube? Aren't there steps that should be taken first? 

and;

What can I do to help defend these babies from this unecessary intervention?

I've been talking for years at parents' conferences about breastfeeding cleft babies and how latching on at birth is ideal, wether the baby can feed at the breast or not. But these mothers whose babies are taken away and tube fed haven't got a chance.

I'm in the process of contacting someone active in the Eurocleft project - a europe wide group of doctors seeking to standardise the treatment of cleft lip and palate across Europe and am hoping to point out this obstacle to early feeding. I thought it would be useful if I could cite material already existing about protocols regulating nasal gastric tube feeding. I assume that there isn't anything out there connected to cleft lip and palate but perhaps for other malformations or prematurity?

Alice Farrow
LLL Leader, Rome, Italy

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