I am running the GNR this year to raise money and awareness of the TOF charity which little over a year ago I had never heard of.
My my wife and I had twin boys in May 2018, after a relatively quick labour Twin 1 Tom came out screaming as a baby should but Twin 2 Wilf was silent when he was born and has to be resuscitated twice before we eventually got to meet him at around 7pm. Both boys were gorgeous and healthy weights but we soon realised something wasn’t right with Wilf, my wife had hold of him and kept saying he’s not breathing properly but the hospital staff just put it down to fluid on his lungs and kept telling us not to worry. Then he stopped breathing and was taken away from us, they got him breathing again and assured us it was just fluid on his lungs and all will be well. He was put in NICU as a precaution and my wife and Tom were put on the ward. Fast forward a few hours, I’d gone home to get some sleep, it was now 2am and I received a phone call from my wife telling me she had a consultant who had just explained that Wilf didn’t have fluid on his lungs he needed a life saving operation because his oesophagus had a dead end and he had a tube going from his tummy into his lungs, he was a TOF baby and had TOF and OA. Wilf was then transferred to The RVI in Newcastle for emergency surgery.
Wilf was fixed but not cured the following day, thankfully the surgery went well and he spent the following 2 weeks in PICU. My amazing wife was eventually allowed to breast feed him on day 9, this was a scary time because it was the first time we know if the operation had been a real success and he was able to swallow and the oesophagus was completely sealed, we didn’t want any leaks. Thankfully it all went to plan and after Wilf dropped from his birth weight of 6lb4 to 4lb10 the aim now was to get weight on Wilf.
Fast forward to to today and Wilf has had a very rocky road, in February this year he was diagnosed with severe tracheomalacia (floppy/flat windpipe) this was after months of a constant chest infections and trouble breathing through the night. His doctors said it was one of the worst cases they’d seen, so Wilf has CPAP at home on a night to help keep his airways open and he is also on constant antibiotics to keep the infections at bay.
Eating wise Wilf did really well with his breast feeding and milk and at 6 months we started to wean him (very nervously) with pureed fruits and veg. All was going well until January this year and he choked for the first time, my wife was on her own with Wilf his twin and their older sister. Wilf went blue and floppy and she had to call an ambulance, after lots of bouncing Wilf up and down and back smacks the food eventually dislodged from his oesophagus and he could breathe again.
Unfortunately this is now part of our lives, Wilf chokes and we are learning how to cope with it. He choked just this week and again my wife was on her own and had to call an ambulance and he was taken to our local hospital and it resulted in him going into surgery at The RVI on Friday for emergency surgery to stretch his oesophagus and a bronchoscope to check his airways. His team of doctors have said he has dismobility of his oesophagus and airways so this is our next chapter.
The TOF charity have been amazing and are always there for advice and reassurance, we have learnt so much in Wilfs 14 months of life and that is down to the support we receive from Wilf amazing team of doctors, nurses, SALT’s, physio, but mainly the TOF charity and I am proud to be doing the GNR for them.
Please help me reach my target.