Parents Story’s TOF / OA VACTERAL.










So They Don’t

Feel so


Our First Born Riley Paxton Born 14/08/2014 TOF / OA VACTERAL.
Riley was born a 32+6 via an emergency c-section due to fetal bradycardia at 2:21 Am  weighing 3lb 8oz I was out of it when the surgeon came and listed all of his problems I was in shock and kept drifting in and out of conciseness due to the anesthetic and the morphine drip whilst signing his first of many surgical consent forms unaware of the journey we where  about to embark on Riley was a long gap he was given a Gastrostomy so he could be fed while we waited for him to be repaired which finally came on the 15th December 2014 he was 15weeks old.
On Christmas Day 2014 we finally got moved on to the surgical ward ready to go home, however, Riley still struggled to feed vomiting everything so much he choked so his surgeon decided to give him a fundoplication a surgery to wrap the stomach around the oesophagus in order to prevent the reflux rising , after spending another 3 months on the ward and a total of 7 months in hospital we finally went home with him which was scary as hell he needed regular dilations of his oesophagus to help him eat Riley will always struggle with food but for now he is managing most foods but still needs his Gastrostomy feeds to top him up and help him grow.
When Riley was two we found out we were expecting our second child which was a happy moment especially when they told us we were having a girl what we didn’t expect was that our little girl would also be a TOF.
Our Second Born Ruby-Leigh Paxton Born 10/11/2016.
Ruby was born at 39+1 via a planned c-section at 16:27 pm weighing 6lb 7oz I was awake when Ruby was brought into the world I need her first cry it was breath after experiencing the traumatic birth of Riley and all that followed it was emotional.
When I tried to feed Ruby her first bottle and she coughed and splintered it back up I just knew she was about to take the same path as her big brother Ruby-Leigh was repaired on day one of her life which was the 11/11/2016 and is still struggling today needing regular dilations and has had a stent placed which also has failed Ruby will have to have a repair and also has just had a gastrostomy fitted to help her gain weight.
But despite all that they both have went through I am Truely blessed to be there Mammy because they are so happy well-behaved children who never fail to amaze me so I would just like to take this time to say to all our extended TOF Family we thank you for all for being there with us through all the highs and all the lows and too any new TOF parents it’s not easy being a parent it’s even harder when your child is born different but you got this and we’re right there with you.