Sussex

Baby Marnie's 'terrifying' wait for donor heart

Marnie Brace Image copyright Brace family
Image caption Marnie has been at the Evelina Hospital in London for the past five weeks

The mother of a seriously ill 19-week-old girl has spoken of the "terrifying" wait for a donor heart.

Marnie Brace was born on 10 May with a "very severe" heart problem which doctors believe may be due to a rare genetic condition.

Her parents have been told her only hope is a heart transplant, a complex and risky procedure with no guarantees.

The thought of the operation "scares me to death", her mother Amy told the BBC.

She said "the call" often comes at night and that "it is such a serious, major operation... it could be our last moments with her."

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Media captionMarnie Brace has very severe heart problems

'One day at a time'

Marnie was born in at the Evelina children's hospital in London after scans revealed a problem with her heart.

She was diagnosed with hypertrophic cardiomyopathy, a thickening of the heart walls, and is suspected of having a genetic condition called Noonan's syndrome.

After the birth, she struggled to gain weight and had to be fed through a tube.

Image copyright Brace family
Image caption Amy and Nick have another son, Jonah, who is 20 months

Then at 14 weeks, her heart failed and it was confirmed she needed a transplant.

The family have been told she would be only the second baby with her condition to undergo the procedure.

"We are living one day at a time," Amy said. "We are very positive people but we have our down moments when we struggle."

'Tragedy'

Amy and her husband Nick, from Eastbourne, are living close to the hospital in Ronald McDonald accommodation with their son Jonah, 20 months.

"Without their support, I really don't know how we would have coped," Amy said.

Image copyright Brace family
Image caption Marnie has just started on a new medication which it is hoped will make her heart work more efficiently

Family friend Sarah Barton has started a Just Giving page to raise funds for the family while they support Marnie.

She said: "The doctors have told them to anticipate a wait of about 12 months - that's if she lasts that long."

She added: "Another baby has to die, that's the tragedy of it. It's so traumatic losing a child and people aren't prepared for it.

"Parents don't think about putting their baby on the organ donor register.

Amy wants people to "have a conversation about organ donation" before they find themselves in that situation.

"One of those people could end up saving Marnie," she said.

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