Parents' moving record of rare heart condition sufferer Kayden Hann
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.”
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.
18/01/13
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