Additional Needs

Tube Feeding Awareness Week - our journey so far

Posted by Stephanie Swann on 9th February 2021 Additional Needs, Advice & Support, Disabilities

Share this article

We are still relatively new to the world of tube feeding.

My son Joseph has just turned 2. He has been fully tube fed since birth. 

For anybody that doesn’t know, Joseph sustained a grade 3 Hypoxic brain injury at birth (lack of oxygen and blood flow to the brain, causing damage to numerous areas of the brain). 

We were told by medical professionals when he was born that a lot of his reflexes were absent.

Including his suck, swallow, gag and cough reflexes.

There was a chance they could kick back in but know real way of knowing. 

At the time, I hopefully and perhaps naively assumed that this would be a temporary measure as I knew that I myself had been tube fed for a short period of time as a newborn. 

It took a while before it fully sunk in for me that I would have to say goodbye to the image of my son with podgy, chocolate covered cheeks. 

I found this difficult at first because  it is human nature to associate such feelings of pleasure, bonding/socialising and enjoyment with food/mealtimes.

It felt like a huge thing that he would miss out on.

As time passed though, it became the norm, much like many of his medical needs.

I have accepted that it is highly unlikely that Joseph will ever eat or drink anything orally.

I’ve dealt with my sad feelings about this as I know that he doesn’t know any different.

You can’t miss something you’ve never known. 

Despite tube feeding becoming just another part of our daily life, it has been far from plain sailing.

Joseph’s journey began with small amounts of expressed breast milk via a nasal gastric (NG) tube. (A tube inserted through the nose and directly into the stomach).

I had never planned on breast feeding during my pregnancy but at a time where I felt so out of control and helpless, I was over the moon to be able to have one important ‘Mum’ thing that I could do for my baby.

I managed to express my own milk for 8 weeks which I’m told under such stressful circumstances, was amazing. 

At 3 weeks old, Joseph began struggling with silent reflux and with no gag or swallow reflexes led to frequent milk aspiration, chest infections and some big scary incidents where medical staff had to intervene to get him breathing again.

It was quickly decided that his reflux was too severe to tolerate being fed into his stomach, despite being given numerous reflux medications.

He was then placed on nasal-jejunal feeds. (A tube inserted into the nose, through the stomach and into the second portion of the small intestine or “Jejunum”).

This meant that the milk would bypass his stomach altogether to reduce the reflux as much as possible. 

The problem with NJ tubes is that they need to be checked that they’re in the accurate location under X-ray.

This means increased exposure to X-rays if they become blocked or pulled out - which can both happen relatively easily and frequently.

The other issue is that the tube can curl up inside and end up going into the stomach or chest and there would then be the risk of aspiration again.

Because of these risks, it was considered by Joseph’s team of doctor’s that it would be unsafe for him to come home. 

Joseph remained in hospital for almost 8 months as we painstakingly waited for him to gain enough weight and grow strong enough to undergo gastrostomy and fundoplication surgery.

A gastrostomy is a tube surgically placed directly into the stomach for feeding.

A fundoplication is a procedure to help keep the stomach opening closed in order to stop reflux coming up into the windpipe and back down into the lungs. 

Joseph’s surgery went well but he struggled to breathe on his own after they took him off the ventilator.

He had to be placed back on the ventilator and was poorly in the ICU for a week.

He built his strength back up and was then transferred back to our local children’s ward where we began putting plans in place for him to finally come home. 

Following the surgery, feeding was going very well for a period of around 8 weeks and then we ran into more problems.

The fundoplication hadn’t been as successful as we’d hoped.

His reflux was back and he began vomiting, losing weight and having gastric bleeds due to possible ulcers.

The reflux and vomiting then led to aspiration and chest infections.

He was in and out of hospital.

It was eventually decided that it would be a better option for Joseph to go back to jejunal feeds, this time via a Gastro-jejunal feeding tube (GJ).

This is a simple procedure that can be done under X-ray and a mild sedative.

It is similar to the NJ tube except instead of going in through the nose, the tube goes directly through the gastrostomy and into the jejunum.

This still poses risks but up to now has proved our best option.

Since the transition to GJ feeding, Joseph’s health has improved massively.

He hasn’t had any chest infections or hospital admissions for a whole year.

I think although social distancing, isolating and stricter hygiene measures have had a hand in this, it is mostly down to the jejunal feeding. 

The downside to this type of feeding is that Joseph has to be attached to his feeding pump bag all day every day.

This can be restrictive and challenging at times as he likes to roll around and he then gets tangled in the tube.

It can also be difficult when we’re out and about, but like everything else it has become our new normal and we’re just used to it being there.

I can’t help but be extremely grateful for it’s presence because it means that Joseph can be fed safely. 

I often see articles weighing the pro’s and con’s of breast feeding Vs bottle feeding.

When I was pregnant and attending antenatal classes there was absolutely no mention of babies going on to need tube feeding, temporary or permanent.

I feel this is something that should be represented more.

After all, fed is best, whatever form it may take.