Our brave little girl

The seven-year-old politely invites me in before bouncing down the corridor to fetch her mother, Lucy.

It’s easy to feel you’ve stepped into a perfect example of domestic bliss.

Friendly and bright, Millie seems like an ideal child and h e r well-behaved older brother, Ben, and one-year-old little brother, Theo, complete the picture in the impressively tidy and welcoming house. I have to remind myself that, however full of life she may appear, this little girl is not going to grow up.

Millie has a terminal heart condition, pulmonary hypertension. But she has developed an even more pressing problem which requires urgent surgery if her reduced life expectancy is not to be cut still shorter.

The only clue that everything is not quite as it should be is the pretty green shoulder bag hanging across Millie’s body. It contains a pump which constantly supplies her body with the cocktail of drugs that are needed to keep her alive.

Within a month, surgeons at Southampton General Hospital will perform open-heart surgery to remove the sub-aortic ridge which is the most immediate threat to her life.

The operation is risky, but Millie’s mother, Lucy, feels that it’s the lesser of two evils for her little girl.

“Her doctors at Great Ormond Street have discussed her at a conference of surgeons twice, with a view to repairing this problem with her heart, but they decided that the risks were too great,” she says.

“But her surgeon asked Southampton if they would perform the operation and they have said yes.

As he has put it, yes, the operation is risky, but if that risk isn’t taken, it’s inevitable what will happen: she will die much sooner. I want them to try. She’s so strong, if anyone can do it, she can.”

If the operation goes very well, it could even mean that Millie no longer has to have drugs constantly pumped into her body to keep her alive.

Lucy and her family have learnt to be cautiously optimistic about Millie.

She collapsed with heart problems when she was just three weeks old.

Since then, she has had to have open-heart surgery, been on life-support and she’s had to be resuscitated on more than one occasion.

Once, following a particularly traumatic episode, she went blind, though her sight later returned.

Millie’s story featured in the Echo in August, 2005, when she became the face of a successful campaign to save the jobs of specialist cardiac nurses at Southampton General Hospital, which she still attends at least once a month.

When she was first diagnosed with pulmonary hypertension, she wasn’t expected to live beyond the age of two.

But, at seven, Millie isn’t just surviving, she’s thriving.

“She has this terrible disease, but she’s not like other children with it,” says Lucy.

“She’s so fit for someone with pulmonary hypertension. She’s breaking all the rules about what she should be like. She shouldn’t be growing; she shouldn’t be able to go to school; she shouldn’t have survived this long by a long way.”

Having a terminally-ill child has, of course, transformed Lucy’s outlook on life.

However, it hasn’t made her negative. Rather, it has taught her and her family to enjoy the positive things that are happening in the present.

Millie is getting on very well at school, saying: “I like lessons best, science, numeracy, literacy and maths.”

She has also recently started going to Brownies, which she loves, thanks to the fact that she won funding to have a carer take her as she cannot be left alone.

Her family has had a dry suit made so Millie can go swimming.

It’s important that she doesn’t get her pump or the line that feeds drugs into her body wet and she took to the water for the first time since she was two a few weeks ago.

“We thought she’d be scared, but she jumped straight in. Now she can tell her friends she’s been swimming. You don’t realise how much a part of children’s lives swimming is.”

With children, there is a tendency to look towards the future, what school they will go to, what job they will do.

But Lucy has had to teach herself not to think this way with Millie.

“I don’t think in terms of the future with Millie. In September, she’s due to move up to the junior building of her school which has more stairs and bigger children to contend with and we’ve had to have meetings about how she will cope with that,” she says.

“I don’t feel comfortable talking about something that’s that far away.

With Millie, things do take a lot of planning, like going on holiday, but if we do have to plan something, we then put it to the back of our minds.

“You can’t begin to think about things going wrong,” she adds.

“We’ve learnt the value of living for now and not focusing on what’s going to happen in the future.”

Millie’s uncle, John Francis, is taking part in the New Zealand Iron Man challenge on March 7 to raise funds for Naomi House children’s hospice, which Millie uses, and the Pulmonary Hypertension Association UK.

He will be swimming 3.8km, cycling 180km and running 42.2km in what is considered to be one of the most gruelling races in the world.

For more information and to make a donation, visit justgiving.com/john_francis