Charity Ref : NUT/021354

So this is my Sister, Brother in Law and Nephew's story of when he came into our world, so a team from RAF Leeming 90 Signals Unit are going to run the GNR for the Newcastle Upon Tyne Hospitals NHS Charity (PICU Ward). They have done so much for my family so it is a privilege to run for this amazing hospital and staff that everyday help to save so many lives and support so many families. So please take the time to read the story and understand why.

Henry was diagnosed with a Trachea-Oesophageal Fistula with Oesophageal Atresia while still in the womb at around 28 weeks gestation. For those to whom this is a new term, this is where the oesophagus and trachea do not separate properly. The top part of the oesophagus ends in a blind pouch while the bottom half has a fully functioning connection to the trachea meaning that air would enter Henry's stomach. We knew he would need an operation at birth to correct this but we where not prepared for what happened next.

On 22nd March 2016 at 9:50pm Anna's waters broke quite spectacularly due to the increase in amniotic fluid. Henry was only 32+4 weeks gestation and we knew this was too early. Anna was put in the car and we almost flew to the University Hospital of North Durham where she was very quickly rushed in for a Class 1 Caesarian Section. (For those who are not aware a Class 1 is where there is real danger to the life of mother, baby or both)

The nurses kept me fully updated with what was happening and Henry was born at 23:59 weighing in at just under 2Kg. The nurse then told me he was struggling to breathe but not to worry. The surgeon, I believe, managed to intubate Henry, but said it was very very difficult. I got to see Henry for a few seconds as he passed en route to SCBU. We were told the RVI SCBU team were en route to collect Henry.

Just before 2:30am, I was allowed into SCBU to see him. I'll never forget how he looked, helpless and the worst thing is there was nothing I could do to help him. The RVI packed him onto their transport incubator and he was taken to see mum for a few moments before being taken by Ambulance to the RVI. Watching your son going to hospital without you is bad enough, but actually seeing the Ambulance leave with it's blue lights and siren on made it hit home.

The following day we got a call to ask for permission to operate, SCBU were having issues with his oxygen levels and said the TOF needed to be repaired to save his life, we of course agreed. I drove to the RVI not having a clue what was going to happen.

Upon reaching SCBU, I was taken into a room with Dr Fenton, a man for which we have the utmost respect who explained to me Henry had a 30% chance of survival and he was a very very sick baby and to make no mistake that he may not make it. I was allowed to see Henry again and held his hand at which point Henry began to respond to my voice, he obviously knew his daddy. He went off to theatre and I walked with him. Let me tell you the hardest thing you will do in your life is entrust the life of your Son to a complete stranger. That stranger turned out to be Mr Jaffray, who lets be honest, in our eyes is a God now and this will become apparent why later in the story.

We had got a really experienced surgeon Mr Jaffray, who completed the repair and Henry began to improve, even getting to the point where he argued with the ventilator so the decision was taken a few days later to remove the support, Henry failed to breathe on his own sufficiently. Dr Fenton then told us he suspected something called a Laryngeal Cleft and after a broncoscopy, it was confirmed he did indeed have a Grade 3 Laryngeal Cleft, meaning that his stomach contents could reach his lungs, but more importantly his trachea at the top had tissue blocking it, hence why he couldn't breathe unaided. We know now that without that cleft, Henry would have died at birth. The cleft allowed him to be intubated.

The decision was made to fit Henry with a tracheostomy and this was done at 2 weeks old. The operation was a success and he was transferred to PICU, but later that night he started to secrete green bile out of his tracheostomy. His TOF repair had refistulated and his lungs were getting damaged by stomach acids. Henry was rushed to emergency theatre where Mr Jaffray again repaired this using some bovine tissue to keep the oesophagus and trachea apart. This worked and Henry started to recover. He was given a low chance of survival.

On the night of the 12th May 2016 Henry began to need resuscitation assistance and I for one had a gut feeling something wasn't right. I was to be proved absolutely correct. At around 16:45 on the 13th May (Henry's due date and a Friday!) Henry stopped breathing and went into cardiac arrest. To say the world fell out of us at that time was an understatement. PICU nurses and Consultants were fab immediately starting CPR and within minutes Henry looked like nothing had ever happened. Assuming a one off we had some tea, but it happened again around 8pm, this time the broncoscopy showed that Henry had, instead of going floppy around the repair, grown scar tissue inside his trachea and with secretion was blocking the airway. This was life threatening.

We were told that he had to go to emergency surgery and had a <5% chance of survival and we may need to make a difficult decision about his life. Thankfully Henry's scar tissue was successfully balloon dilated and he pulled through.

Henry spent approx 7 months in PICU where the care was always superb, and its for this reason we want to give back to the people who helped Henry and also support our amazing NHS, which lets be fair without this Henry would just be another statistic.

Henry has been home since November and is thriving, his cleft surgery is still pending.

It's for that reason we hope you will join with us in raising money for this amazing cause.