02.09.2019

It’s a long journey – for both brave Henry and his uncle Alex

Henry Caine was just a few hours old when he arrived at the Special Care Baby Unit at the Royal Victoria Infirmary, Newcastle.

He was born with Tracheo-Oesophageal Fistula (TOF), a rare congenital condition of the oesophagus and/or trachea that affects one in every 3,500 babies.

A few days after birth, Henry had bronchoscopy surgery and at two weeks was fitted with a tracheostomy to help him breathe.

However, his parents James and Anna were also delivered the devastating news that Henry had many other medical complications including a hole in his heart and a horseshoe kidney, resulting in a seven-month stay at The Great North Children’s Hospital.

Henry is one of just a handful of children in the world with his combination of diagnosis and to date, has been in theatre 45 times, several of those being for lifesaving surgery.

Consultant Paediatric Surgeon, Bruce Jaffray and Consultant in Neonatal Paediatrics, Alan Fenton were instrumental in saving Henry's life.

“Mr Jaffray and Mr Fenton performed miracles in Henry’s early days and defied all odds” explains Henry’s father James.

In support of the excellent work of staff at the hospital, Henry’s uncle, Alex along with team mates from RAF Leeming 90 Signals Unit have decided to tackle the Great North Run to raise money for the Great North Children’s Hospital Foundation.

Alex, who is in the RAF, is currently based in the Falklands and training with his team mates for the half marathon in his spare time, but he is determined to complete the run and raise as much money as he can for the Foundation.

“I want to run for the Great North Children’s Hospital because of the fantastic work they have done for my family and the kindness they have shown us over the years. I hope the money I raise will help other families to benefit from the care GNCH offer”

Now three, Henry has hit all his major milestones apart from speaking, which is prevented by the tracheostomy.  Many of his medical complications are now resolved and he is off oxygen and breathing for himself.

However, Henry still has his tracheostomy to help him breathe which requires further surgery and he will shortly attend Great Ormond Street Hospital for the reconstruction of his laryngeal cleft. If successful, it is hoped doctors will be able to remove his tracheostomy.

Henry is now able to live at home with his parents and older brother, which is something doctors were not sure would ever be a possibility.

“The team in the Special Care Baby Unit and Great North Children’s Hospital gave us a very special present, they gave our son his life and we don't know how we could ever repay that debt. We’re ever so protective of our NHS now” says Henry’s Dad, James.

“Our wish is to promote the fantastic work of Great North Childrens Hospital and Newcastle upon Tyne Hospitals and give hope to parents embarking on the journey- there is light at the end of the tunnel.”

To donate visit: https://www.justgiving.com/fundraising/jonathan-grayson1 

 

 

 

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