Heart of the matter

10:00am Sunday 2nd March 2008

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BELINDA Kemp hardly dared to pick up baby Madeline in the hours after she was born.

"I was too scared to hold her because I didn't want to pull out tubes," she said of Madeline, whose tiny body relied on so many support systems to keep her alive.

In the past year, Belinda has become accustomed to caring for Madeline while she has been treated in intensive care units.

Within days of her birth, she had the first of several operations for the complicated condition, which means her heart is not functioning properly.

They now have such a close relationship that Madeline keeps turning to Belinda for cuddles and hugs as we talk.

In fact, hugs with Madeline is the pose for many of the photographs in their Colchester home - with father Martin and brothers Ben, four, Alex, ten, and Matthew 13.

Among the more typical family photographs are the ones of Madeline and Ben as babies - with tubes attached helping them fight against the heart defects with which they were born.

Belinda first realised there were problems when, at eight weeks old, Ben was not growing or feeding at the expected rate.

"I knew there was something wrong when he slept through the night and I used to have to wake him up to feed," said Belinda.

Tests showed Ben had heart defects, including two holes in the heart.

He first underwent open heart surgery at seven months, and had more surgery before now reaching the stage where he can lead a normal life.

"Ben is fixed, except we have been told he cannot be a professional athlete," says Belinda with a smile. That does not bother Ben as he whizzes about on his scooter.

Madeline has severe heart defects which are likely to affect her for life.

She had the first of several major operations, including open heart surgery, at only 16 days old.

She will have more over the years, probably needing a heart and lung transplant when she is a teenager.

In the meantime, she relies on daily medication and vigilance from Belinda.

"I have to make sure she does not go blue or get too breathless, which would show Maddie is not getting enough oxygen," explains Belinda. "It is always a possibility that she could go into heart failure."

But, she says, the family are just thankful that they have Madeline to care for.

l For on the Heartline charity, which supports families coping with congenital heart disease, go to heartline.org. uk