My nephew, George Arthur Parkins, was born in September 2017. It was such an exciting time and I couldn’t wait to be an auntie to my sisters baby.

Very soon after being born the doctors realised something wasn’t right with George. He was coughing some horrible mucus up, and they took him away to check him over, after only half an hour of cuddles with his new mummy and daddy. He never came back to them. The doctors scanned and x-rayed him urgently.

They found George was born without a bottom hole, his bowel wasn’t fully formed, he had two holes in his heart and the main complication was his oesophagus did not meet his stomach. There was a gap. But it was also attached to his airway. This is very complex.

Tracheo-Oesophageal Fistula (TOF) and Oesophageal Atresia (OA) are rare congenital conditions of the oesophagus (food pipe) and/or trachea (airway) that affect one in every 3,500 babies.

At just six hours old he was transferred by ambulance to Nottingham’s QMC hospital from Derby. It was 50/50 whether he would survive the journey.

Ritchie, my brother in law, followed in the car. My sister was too unwell after a horrific 36 hour labour, and had to stay at Derby. She was transferred the next day, and admitted as a patient for 10 days.

At 13 hours old George had major surgery which saved his life. He was in the Neonatal Intensive Care Unit for a month. Sophie and Ritchie lived there in a parents room. They couldn’t hold him for five days which was heartbreaking for them. They stayed by his side from 8am often until 11pm/midnight. We got to visit on his one week birthday but couldn’t touch or hold him. We took Sophie and Ritchie to the pub down the road for a much needed beer and wine! George had another few operations whilst in NICU, but went home just before his one month birthday.

George had a stoma created, known as his ‘tum bum’, as the bottom hole couldn’t be made in that initial operation as he was so fragile. He went home with a feeding tube in his nose which went straight to his tummy. George was fed through this for a few months.

They were trained in CPR, stoma care and the feeding whilst in NICU, but as there wasn’t a special room, it was done in staff rooms, on the unit, and in any spare room.

After a week at home, George deteriorated very quickly. To summarise a horrific situation, George was ventilated and sedated for two days before an emergency tracheostomy operation was performed at QMC. His airway had shrunk to the size of a pin head. If they hadn’t taken him in that Sunday evening to A&E he would have died.

Sophie and Ritchie again didn’t leave his side and it took a while to adjust to the situation and how their lives had changed so dramatically. They lived at QMC for 11 days and were trained in tracheostomy changes which have to be done every few days, and suctioning, which can be as much as every few minutes. They also learnt CPR for a baby with a trachy.

George needs 24/7 care so my sister extended her maternity leave to care for him, and is still off at present.

They were told the trachy would be in for 2-5 years which was a daunting prospect. However, after visiting Great Ormond Street Hospital, the amazing surgeon said he would perform the surgery when he was one. He is due to be operated on just after his first birthday. He will be asleep for a week, and then in hospital for a further week to recover.

In the last year George has had 15 operations. Many were dilatations of his oesophagus - in effect, stretching it as the repair site shrinks when healing. They were weekly, then fortnightly, and now he hasn’t needed one for months. George also had a bottom hole made earlier this year, and his bowel brought down. A few months later they reversed his stoma, and the tum bum has gone! All his little wonky bits, as we fondly call them, are being fixed one by one.

He is a hungry baby and really loves his food and milk. Weaning is going well, but they take things slowly and steady so as not to rush George.

The trachy reversal and reconstruction of his airway is a huge operation, and it’s a scary time. But Super George has overcome everything amazingly so far. His two holes in his heart are closing on their own! And George has learnt to override his trachy, and can chat and babble, laugh and cry! This is just incredible and unbelievable.

George has been through so many scary ordeals, and been admitted to QMC’s Paediatric Intensive Care a number of times with bronchiolitis, and other viruses of his airway.

Sophie and Ritchie are trying to raise £25,000 to fund a parents education room; a nice, warm, welcoming environment for parents of babies with complex issues to learn how to care for their baby. Including trachy care, CPR, stoma training and feeding, amongst some of the things.

My nephew is known as Super George, and I want to help raise £1,000 towards this room. The room is to be named after him, and will be a lasting legacy at the hospital.

More information about Super George’s Army Fundraising Appeal is available at Justgiving.com/teams/SuperGeorgeArmy. On Facebook you can visit Super George’s Army Fundraising Appeal page, and on Twitter, follow @SuperGeorgeArmy.

Please dig deep and help me to say thank you to the hospital for saving George’s life. Throwing myself out of a plane is a pretty scary thing to do, and I can’t say I’m looking forward to it! But after a few bottles of prosecco with my sister, I signed up!

Thank you for your support,
Katy xxx