Two year old Kayden Hann fit and healthy after having a major heart operation. With mum Stacey Fisher

by Lauren Fruen

lfruen@thekmgroup.co.uk

A touching diary written by the parents of a tiny tot who fought a rare heart condition has revealed in detail the struggle they faced as they watched their son recover in intensive care.

Little Kayden Hann, who lives with his mum and dad in Ennerdale, Faversham, was diagnosed with a heart defect shortly after his birth.

Scans revealed irregularities in Kayden’s heartbeat and his parents, Stacey and Wayne, were told by doctors that he suffered from a rare condition called Tetralogy of Fallot.

Brave Kayden was taken to Evelina children’s hospital for his operation in May 2011.

A poorly Kayden battles against his illness

There Stacey and Wayne decided to record their time at the hospital.

Their emotional entries reveal the heartbreak they faced, the tender moments they shared with their son in hospital and the pride they felt as he recovered from the intensive operation.

Dad of two Wayne said: “A senior doctor told us that there were some irregularities in Kayden’s heartbeat.

"He had a scan which revealed he had Tetralogy of Fallot which consists of not one but four heart defects in one. We were told he would need surgery before he was one.

“The bottom just fell out of my world and as soon as I got home I broke down. My little boy had this problem and I could do nothing to help him.”

Read Kayden's parents' touching diary

The diary is written to Kayden and Stacey hopes it will help him understand what he went through as he grows up.

She said: “We were absolutely petrified before the operation. I carried him down to the operating theatre. It was the worst experience of my life. My heart just broke.

“But he amazed absolutely everybody at the hospital. They all absolutely adored him and said how brave he was. Some of the nurses even wrote in the diary to him.

“He is such an amazing child. I always call him my miracle boy. If he did not have the operation the doctor said he would struggle to live past 40.

"He is full of beans now and always on the go. He loves Spiderman and playing with his friends.”

Dad Wayne added: “He has such a vibrant personality. He continues to grow in character.

"We want to say a massive thank you to all the magical staff at the Evelina children’s hospital and to anyone who has a child with similar problems have faith, your children, however young, can truly amaze you.”

FACTFILE

What is Tetralogy of Fallot (TOF)?

TOF is an abnormality of the heart and major blood vessels, which may be found in babies.

It is one of the most complex heart problems, as there are four different abnormalities:

• A large ventricular septal defect - one of the more serious types of hole in the heart, in which there is a connection between the two main pumping chambers of the heart (ventricles)

• Narrowing of the pulmonary valve (pulmonary stenosis) - this means the heart has to work harder to pump blood into the lungs to collect oxygen

• Right ventricular hypertrophy - thickening of the muscle wall of the right ventricle

• A displaced aorta - the major blood vessel that takes blood out of the heart and directs it around the body

Without adequate oxygen, the blood in the arteries isn’t as bright red as usual and the baby usually looks blue and breathless, often even at rest.

Almost 70 per cent of babies with TOF will need complex heart surgery within the first year of life if they are to survive. Without treatment, about 30 per cent will die before they reach their first birthday.