Tetralogy of Fallots and Gastrostomy 

This is Ted Rourke born 6/07/2012. After a few hours of being born we were told Ted had a heart murmur during the paediatric checks. Being our second child this came as a shock. After a lot of indecisiveness at our local hospital we decided to take him to Alder Hey ourselves. On day 10 of being born he was diagnosed with TOF.
He did well for 4 weeks, then dive bombed! Our local couldn't stabilise him so we were blue lighted to Alder Hey. Here he stopped feeding entirely & got worse & worse. Finally after a scary moment he was taken to theatre at 8pm on 31st Aug 2012 & had an emergency bypass (BT shunt). This was a long and painful recovery for Ted. We went home with the NG in & I look back now & have no idea how I coped at home with it! It was just awful. So on 14th Oct 2012 he had a PEG fitted. He finally started to recover properly from the shunt and was gaining weight for the first time ever & that awful reflux finally started to subside. He lasted 18 months on the shunt & we had the PEG replaced with a Mic-Key button. 

By this time last year he had become incredibly poorly again & it was time for his OHS as the shunt was starting to fail. Teds was so old having his fix due to his capillaries not sitting in the correct place in his heart, so it was too dangerous to operate earlier.
Finally on 21/01/2014 he had his full TOF fix. This time was much less stressful & he was done in 7 days! Since he arrived home he has gone from strength to strength, he has now also started to eat!! In my eyes an actual miracle, his aversion was that bad I never thought he would!!! But the Mic-Key is gone & to anyone passing him he looks a happy, healthy boy!!!
Through out the last 2 years we have had an amazing volunteer, Annastacia. Ted loves her dearly & she was a rock for me. Also Carren & the team have been incredibly supportive & always on the end of a phone with advice & words of encouragement. I could not of survived if it wasn't for Lagan's Foundation, thank you! Heart Felt Care xxxxx



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