25/09/2012 20:43 BST | Updated 22/05/2015 10:12 BST

Have Some Respect For Tube-Fed Babies. A Mother Speaks Out

Have some respect for tube-fed babies! One mother speaks out Alamy

I was horrified to read, on this website last week, some disheartening and cruel comments on the story about a tube-fed baby in Costa Coffee being asked to leave.

Costa Coffee apologised, which is great, but apparently the mother of the baby has been getting abusive messages.

I had to stop reading the comments on this site quite quickly because they were upsetting me so much, but it appeared that some people feel that disabled babies and their medical equipment should be kept at home at all times, or used only in the privacy of a toilet so as not to offend anyone.


They think disabled babies should not have their needs met in public, like able-bodied babies.


As the mother of an 18-month-old who has a complex lifelong health condition which means that he needs to be tube-fed, these comments shocked me to my core.


How anyone can look at a poor little lamb of a baby who is unfortunate enough not to be able to eat and find them distasteful is beyond me.


I've never come across anti-disability prejudice on a personal level before. I do not have a disability, so having a baby who was born with one has been a steep learning curve.

Thankfully, my own experience tells me ignorance and insensitivity come from a tiny minority. I've only ever experienced complete kindness towards my son when I've tube-fed him and given him syringes of medicines in public.

Until I read the comments on the Costa Coffee story from people saying they find the sight of a baby being tube-fed off-putting, it had never occurred to me that some people might think disabled babies should stay at home.

In my experience, strangers in restaurants and cafes and parks and on trains are incredibly sweet and respectful about it, and as a result I have never been made ashamed about my son's needs or felt the need to hide ourselves away.

Like, I imagine, all parents of tube-fed babies, I do the tube feeding discreetly and I don't make a song and dance about it. And so, most of the time, people don't even notice my son is tube-fed.

When they do notice, though, I've never had so much as a funny look, though occasionally I do see curious looks - almost always from children - which is fine with me. Sometimes, like at Christmas when my husband and I tube-fed our son on a long train journey up north, we've ended up being asked very politely about it by another family and getting to know them.

From the beginning, having an ill baby who spent his first five months in hospital, I've been amazed by how lovely people are to sick children in this country. The response my son gets is always 'Ahhhh!', 'How adorable' or 'How strong and brave'.

But reading these comments, I suddenly feel less confident now when I'm taking my son out that we really are welcome, or that the Paralympic Games have done anything to make some people more tolerant of others whose bodies don't work as theirs do and whose lives are harder than theirs.

And although I don't want to engage with the sort of people who have nothing better to do than sit at their computer making sickening comments about the family of an ill child, I'm not going to sit here and have tube-fed children (or adults) ignorantly bullied.

First of all, tube-fed babies and their parents need and deserve to go out and about and socialise just like 'ordinary' babies and parents. Do people seriously want disabled babies and their mothers to have to stay at home all day for fear of offending others? Don't they think children with health problems should be able to enjoy the same opportunities other children have, from playgroups to mother and baby groups to going to a cafe?

Secondly, tube-fed babies need regular feeding just like 'normal' babies. Some need to be burped or vomit through their tube like normal babies through their mouth. My son doesn't want to be tube-fed and I don't want to carry tubes and syringes around in my changing bag. It is, unfortunately, the only way to keep his weight up, and he has the same right as anyone else to be fed whenever he needs to be.

It is often easier to tube feed my son at home, but if we are out for the day or over lunchtime, I may well choose to feed him wherever we are. I have fed him on a park bench; in the garden; at friends' houses; in cafes on sofas and in restaurants.

Some tube-fed babies may not be able to handle much milk in their gut at any one time and may need to be fed every couple of hours via their tube, or they may be on a feeding pump which means they are fed continuously. It makes complete sense to feed them confidently out and about, and indeed this is very much what health professionals advise.

I think my son's NHS nurse even applauded when I told her I'd fed my son outdoors on my own for the first time. It means disabled children and their parents get to experience a bit of normality; fresh air; social life.

Like many tube-fed children, my son is also learning to eat orally, and this is extremely important for his development.

In no way, as one commentator suggests, is it 'cruel' to take a tube-fed child to a cafe where other people are eating. On the contrary, feeding experts advise that it is good for a tube-fed child to understand what eating is all about.

The more my son sits at a table with others who are eating, the better he learns to eat, and over the last year he has gone from not eating or drinking orally at all to only needing to be tube-fed partially, something I am extremely proud of.

As for others who suggest tube-fed babies should be taken to the toilet to be fed, may I ask you: would you like to eat in a loo?

Lying down a baby on a changing table in a smelly toilet or, God forbid, on the toilet floor to feed them is just a ridiculous suggestion. Of course it's more hygienic and pleasant to feed them on a sofa, at a table or in their pushchair.

Tube-feeding isn't a surgical or sterile procedure. You just need to have washed hands and make sure the general environment and feeding tools are clean - just as you would if feeding a baby or toddler by mouth.

Finally, anyone who is fed for some time through a tube is almost certain to have a significant and long-lasting disability - perhaps cerebral palsy or a genetic condition, and/or major gastro-intestinal or heart defects. It goes without saying that the life of any such child - and their family - is hard.


Anyone without compassion for them has clearly never cared for a sick child; and I'd be surprised if they're a parent.


This isn't just about tube-fed babies; it's about all babies who have some sort of difference. One baby I know, born premature, came home from hospital on oxygen at first. I thought her mother was doing so well when she brought her to a mother and baby activity group. The others in the group whose babies were born healthy could not know just how hard it is to manage a baby hooked up to an oxygen tank in such a class; what it's like not just to be able to stand up and sit down because of all the equipment, or to know you may have to do some sort of minor medical procedure if anything goes wrong. Mothers with healthy babies find it hard to get out of the house; for the mother whose baby was on oxygen I had only the greatest respect.

Another mother I know whose daughter has Down's Syndrome says she can't stand the looks of pity on other mothers' faces when she takes her to the park or playground. Her daughter is an amazing little girl.

Look, we all find some sights distasteful. Some may not like the sight of a breastfeeding mother in public; some might not like children being seen or heard at all. If you find disabled babies in particular so offensive, you need to ask if perhaps you yourself are also causing offence. Is the way you eat and drink pleasant for others to watch? Do you look perfect? Is your behaviour socially acceptable?

A tube-fed baby, or one on oxygen, has no choice but to carry his equipment around with him. But you do have a choice about your behaviour.

And it's time to change it. You deeply offend me.

Olivia Gordon had donated her fee for this piece to Great Ormond Street Hospital.