Letters to the Editor: Parents are helping raise awareness about tube feeding
It is not only premature and sickly babies that require tube feeding: Letter-writer Aisling McNiffe's 18-year-old son has been tube fed since birth. Picture: iStock
It’s a very busy time of the year for raising awareness for those with additional needs. This month alone we have rare disease day and congenital heart defect (CHD) awareness week, and — just this week — we had tube feeding awareness week.
There are a lot of articles and radio interviews about rare disease and CHD awareness. My son has CHD and a rare disease but also he is tube-fed since birth.
I would like to raise awareness about tube feeding. As well as being life-saving it can be traumatic and very stressful for families, both parents and child and of course siblings too.
Sometimes if a nasogastric tube is placed it’s for a short time but sometimes it’s for a long time, maybe even for life. Then there are gastric tubes and jejunostomy tubes which are placed in the tummy area for feeding.
There are many different types. They may suit some children but others may not. Looking after both a nasogastric (NG) tube and a g-tube/pej/j-tube in the abdomen is hard work and many babies and children constantly pull them out.
There isn’t enough support for parents while tube feeding and especially if/when they want to wean the child off the tube.
There is online support available but it can be very expensive and most families can’t afford it and many families may only have one parent who is a full-time carer or only one parent working. It is a very very difficult situation for families. It’s not really recognised and we really would like to see support and information being made readily available for our children.
We have a great enteral feeding service in the two main children’s hospitals in Dublin (CHI at Crumlin and Temple Street) but not in every hospital in Ireland and not in adult hospitals. So for people who live outside Dublin it is made even harder.
We really would like to see that people have easy access to the support that they need, be it caring for the peg site or support with weaning the tube and oral eating. Most children become orally aversive when they have an NG tube and it’s psychologically very difficult to get a child to feed/ eat orally without the correct support.
We need doctors, nurses, dieticians & speech and language therapists who are trained in feeding/weaning to work hand in hand to really give our families holistic support. Some families may need input from psychologists, social workers and play specialists / therapists.
My own son who is now 18 has been tube fed since birth, he has never eaten orally. He was fed by a nasogastric tube at the start, then he had a nasojejunal tube then at 5 months of age he had a gastrostomy tube fitted, last year he had an 8.5-month long admission after surgery and he now has a jejunostomy. Indeed this time last year he was in ICU recovering after life-saving emergency surgery and he is still here thanks to the great surgeons, doctors and nurses in CHI at Crumlin.
You can find our support group for parents of children/adults who are reliant on a carer on Facebook. Parent-to-parent support is vital too. Often it is the only support. It is called Irish Tube Feeding Parent’s Support.
Our former taoiseach John Bruton: A cerebral, steady, decent, honest, patient, and hard-working man.
By all accounts he was also great company. His greatest strength was in actual fact his alleged lack of “charisma”.
Charisma is the kink in our human political genome. From Donald Trump to Vladimir Putin.
Wherever a ‘cult of personality’ is found in Irish politics, the thundering hooves of disaster and recklessness follow hard behind it.
Here’s to John Bruton and to patience, competence, and steadiness. We have a good few like him in Dáil Éireann in many of our political parties. That is a thing to value and recognise.
Going forward, steadiness has real appeal.
It is a pity that Dublin City’s elected councillors and officials have failed to come up with more ideas either from the public or from their own resources which might have been able to solve the antisocial behaviour that was happening in the Harbour Court laneway before they decided on closing it down to the public entirely?
But one useful solution to Harbour Court’s sad situation might be to turn it into a special type of closed, ticket entrance-only museum. A special museum perhaps devoted to making beautiful sounds for visitors to listen to like whenever they might press a button upon a wall or walk upon a piece of cobblestone at their feet in Harbour Court.
Some of the beautiful sounds that visitors to Harbour Court might hear in this way might be the notes sang by different birds or the sounds of different animals.
Perhaps the sounds of various manmade musical instruments could delight the ears of visitors to Harbour Court too.
Maybe the voices could be heard too of the sellers of goods at Dublin markets which come from long-ago or also a voice relating the ups and the downs of Dublin’s long history.
By this way, perhaps, hopefully a piece of historic Dublin that sadly had lately become hellish could instead become in the near future heaven-like with music to be heard wherever visitors may go in it.
Ireland’s Climate Change Assessment (ICCA), not before time, calls for an increased focus on climate adaptation measures and states that implementation is fragmented and currently too slow.
In fact, for several years the UN Intergovernmental Panel on Climate Change (IPCC) has been calling for countries to direct resources to adapt and protect vulnerable coasts, infrastructure, cities, and towns against increasingly frequent violent storms and sea level rises due to global warming.
The catastrophic level of erosion round our exposed coastal areas clearly demonstrates that authorities have been apathetic and totally remiss in addressing the problem.
While the momentous events relating to climate change outlined in the assessment cause serious infrastructural damage throughout our island, the report is unclear as to Ireland’s responsibility for global warming.
Scientific evidence today is clear that global warming and resulting storms develop far from our shores and are caused by the major unrelenting historical and current greenhouse gas polluters in the G7 and G20 countries, most notably USA, China, Russia, UK, India, and the EU among others.
The UN Framework Convention on Climate Change (UNFCCC) states that Ireland’s contribution to global warming is a mere 0.1% of the world total. Also, in terms of greenhouse gas emissions, according to Statistica (statsoft.de), Ireland lies a lowly 16th out of the 27 EU countries.
Clearly therefore, Ireland with an area of 0.054% of the global land mass, has minimal impact on global warming, but imports the destructive effects as a small exposed island off Europe.
It is now generally accepted by the EPA, the Climate Change Advisory Council, and others that Ireland will not achieve its 2030 goals of a 51% reduction in greenhouse gas emissions, which will certainly result in even more fines of €8bn to €10bn.
In this context, it is an irrefutable fact, that any of the measures outlined by the ICCA to achieve the coalition’s unattainable “most ambitious climate change programme in the world” will be of no avail and a gross waste of taxpayers’ money, while the main global polluters continue to pump billions of tonnes of CO2 equivalent into the atmosphere.
The coalition would be well advised to follow the clear IPCC directive that each country should address global warming “commensurate with their overall contribution” and should therefore put egos and bluster aside and renegotiate a longer timeframe, to agree more realistic international commitments.
There is little doubt that such a pragmatic approach, would eventually achieve a far more successful outcome, while importantly, attracting greater cross societal support in the process.
Now that the Northern Ireland Assembly is back in operation, perhaps it time to replace first minister and deputy first minister with the title joint first minister?
After all, both posts have equal legal standing. And it would prevent childish bragging rights.
CLIMATE & SUSTAINABILITY HUB
