Baby Aidan’s big battle against Intestinal Failure

Hi just a little updated story on our fighter

Aidan is our youngest of five, he just turned two years old in August. Aidan has suffered horrifically since birth due to ongoing debilitating gastrointestinal symptoms… he spent his 1st year of life in Crumlin childrens hospital where drs there struggled to find out what was wrong with our little boy.. after many test and failed attempts to feed his gut via every alternative tube feed route, medications etc up until Aidan turned eight months old, by which point Aidan was extremely poorly suffering from failure to thrive, malnutrition and had regressed in all gained developmental & motor skills that doctors sat us down and told us that our tiny frail baby was in intestinal Failure with unfortunately no known cause.. Aidan has being dependent solely on Intravenous nutrition called Total Parenteral Nutrition (TPN) ever since. The is delivered directly to Aidans heart via a Central Vein Line. This source of nutrition comes with many additional complications and constant worry. Intravenous nutrition is commonly hard on other organs leaving the risk of liver and kidney failure. We are also always on high alert for septicaemia (sepsis) due to the central vein catheter running directly to Aidans heart leaves him at high risk.

We live in constant fear in that the treatment that has saved him will potentially be the reason we lose him but without this treatment Aidan would no longer be here

This little boy from the time he was tiny has always wanted to eat, he never refused anything we offered to him, but the pain and vomiting that followed was so incredibly heartbreaking. As Aidan has gotten older those symptoms have gotten significantly worse, he is also now at an age where he is making the connection that eating or drinking leaves him very poorly and in excruciating pain, Aidan has a gastrostomy tube that requires daily venting & draining ( this allows us to decompress the stagnant air, gas and stomach bile from Aidans tummy to try give him relief from his symptoms. Aidan will have additional surgeries in the coming weeks to again hopefully help with his symptoms.

Aidan was accepted by GOSH (Great Ormand Street childrens hospital) for a two week admission where he would have a full diagnostic work up carried out. We were clutching to every bit of hope that this would bring us answers and even more so for a more favourable outcome for Aidans future. However unfortunately that wasn’t the case for our little warrior.

Aidan has a incurable rare gastrointestinal disease called chronic neuropathic intestinal pseudo obstruction or (CIPO)… our only treatment options are to continue on TPN for as long as It’s safe for Aidans liver, once his liver becomes unhappy or in trouble then he will need a full intestinal +/- liver transplant. We are hoping aidan will be older and stronger before a transplant is needed.

Our dream is to be able give Aidan the very best possible quality of life because just like any other little 2 year old he deserves it. We want nothing more than to be able provide him with what ever medical/ sensory equipment he needs while also still trying to be in a position to support all is ongoing Hospital admissions/ treatments both here and in the uk.

If you have had the chance to read his story we would be appreciative if you would kindly consider sharing his story and if you might be in a position to donate something no mater how big or small it would make a big difference to our little boys journey.