Additional Needs

Tube Feeding Awareness Week

Posted by Ceri-Ann Brown on 6th February 2019 Additional Needs, Advice & Support, Disabilities

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This years tube feeding awareness week marks the 5th year that tube feeding has been a huge part of our lives.

In that 5 years, Amy has had an NG tube, a gastrostomy, a PEG-J, a GJ button; and we are on a surgical waiting list for a separate jejunostomy.

We have had a failed fundoplication, contrast studies, scans, all sorts or various clinics, second opinions, tests, medicines and interventions.

She has tried 8 different formulas, several versions of the blended diet.

She’s had bolus feeds, several pump feeds… and now is at a point where she is fed 24 hour via a pump into her bowel to ensure she gets as many calories possible.

If 5 years ago you had shown me a paragraph like the one above… I would have asked what language you were speaking. Because clearly that is some sort of other language.

The tube feeding journey is different for every family. There are so many reasons why someone might be tube fed.

There are many different types of tube, different methods of feeding.

No one method or type will be suitable for all. Giving someone advice based on your experience may be a futile affair.

I am really proud of how far all of us have come in 5 years. It has not been an easy adjustment.

Feeding tubes are a life saving medical intervention - without which, quite simply, my daughter would be dead. The thought of that knocks me sick.

For us, tube feeding was never optional. We were thrust unwittingly into this world with no chance for prior research.

I have met families who are the opposite… who have been advised to get the tube for additional hydration and to take the pressure off tube feeding.

They have to make that agonising decision and feel (for a while) like they are taking a backwards step. But it’s not a backwards step.

An article was recently run nationally about teddies that are adapted with feeding tubes to help “sick children” feel better about their tubes.

My child is not sick. A lot of these children aren’t sick. Some just need a little extra help with their eating and that’s all this is.

She has cerebral palsy. She has epilepsy. But she is not sick or unwell. Some children are of course... but just because my child has a wheelchair doesn't mean she is an illness waiting for a cure.

Most of the time she is a vision of health. This a common misconception that frustrates me. I do adore the teddy idea though and have considered adapting a teddy for Amy.

To be a mum is to care for someone with great care and affection. You also become more selfless, putting the needs of your child first.

Never have I seen a more apt example of this than I have in my meeting of other special needs parents.

Tubie parents (at least ones that I have met) have formed a community of their own, sharing experiences and “hacks” and actively helping others to achieve a level of comfort for these children that most doctors could only hope to achieve.

I am in awe of so many parents I have encountered on this journey and how they’ve been thrown a curveball, but taken it and run with it, even though it isn’t what they were expecting.

There is little to no support offered to people who are met with the challenge of entirely tube feeding their child.

There isn’t a leaflet we were given, or a comforting counselling session. Nothing. There was the expectation of us to learn, adapt and live with this situation.

Year 1: Baby born unexpectedly severely brain injured.

Is ventilated, struggling to live, relies on a machine for everything. I am encouraged after 3 days to express breast milk.

We learn to bolus feed 3ml of milk via NG tube every few hours. As the year progresses we become more astute at the world of NG feeding.

Testing PH levels, eventually learning to repass the tube ourselves. Our child may not be meeting milestones, but she has mastered removal of yellow ‘nose hose’.

Many nights are spent sobbing over her cot waiting for what seems like hours for feeds to go down the tube. There is reflux, vomit, and a lot of screaming.

I’m a new mum. First time mum.

I want my child to thrive, I want to build a bond… I want to feed her. This is a tough pill to swallow.

Will she ever learn to eat? I spent and wasted a lot of time researching ways to improve my child’s swallow, or find a specialist that could teach her how to eat.

Clearly I hadn’t yet accepted that this is how it would be. These were truly the hardest days.

The restraining our baby to pass a tube, the blisters from the plasters, the stares from strangers and constant unwelcome remarks… I was glad this year was over.

Year 2: After months of indecision year 1 encouraged us to get a gtube. A gastrostomy button.

We also opted for a fundoplication in a bid to end reflux related issues. The G-tube is the best thing ever. It’s easy to replace, safe, and actually quite cute.

We accessorise with cute gtube pads and learn about granulation and stoma site care. Bolus feeds eventually come to an end - the fundo fails, the reflux demon returns with a vengeance.

During this time we try several different formulas and medications. We appear at hospital almost weekly, in tears, begging for help to stop our child crying so much.

We move onto pump feeds. We started at a few hours a day… to overnight feeds.. To eventual 24 hour feeds.

Our child being permanently tethered to a feeding pump proves a huge mental and physical obstacle to us.

Year 3: It was a huge fight, but we finally got the team we needed to discuss the future for Amy’s feeds.

The surgeon and I were in disagreement over what the issue is and what needs to be done. Tests are ordered, a peg-j in inserted.

The surgeon recommends total oesophagastric dissociation - a huge surgery. I go with my gut insinct and insist on a peg-j.

The peg-j was not ideal…. We struggled to get the meds in. A GJ button was arranged and inserted under sedation by a radiographer.

We also got a second opinion at a different hospital and were told “no child on this amount of reflux meds can be suffering gastric distress… you need to see a neurologist.”

We were completely deflated.

Year 4: For the first time, our child is gaining weight.

Sometimes dropping it again whilst poorly and not tolerating feeds… but we are getting somewhere!

We go for yet another second opinion at yet another hospital further afield… and the surgeon listened.. And agreed!!!

We are placed on a waiting list. By this point our daughters health takes a turn for the worse - epilepsy returns and proves difficult to control.

I seek out counselling to help me with the grief and PTSD caused by watching my child endure so much pain. The tube feeds no longer seem so bad.

They are just normal to us now and part of everyday life. Every now and then out of nowhere grief will smack me over the head when I see a mum spoon feeding her baby a yogurt.

I suppress the tears for when I am next alone, and continue my day with my head held high, prouder than ever of how far we have come.

Year 5: Is just beginning. I am sad that g-tube feeds never worked.

am sad only one formula can be tolerated. I am nervous for the surgery and want it over with.

But I am excited at the prospect of no more sedation being needed for tube changes, and being able to independently care for the stoma sites ourselves.

Amy gets to enjoy a taste programme at school, and we regularly offer her tiny tastes on her tongue. Sometimes she will grimace and pull away.

Other times she will do a cheeky grin and spit out what we gave her. It’s all about taking things at her pace and having tastes as a sensory treat.

“Will she ever eat?” and other similar questions are met with a well rehearsed pre-learned response.

“No. Probably not. If she did then cool. If not then oh well, she’s getting better nutrition this way than any of us ever could.”