Mum fights misinformation about baby heart defects

The mother of a baby born with a rare heart condition has said she wants to tell her story to give other parents hope.

Frankie, from Chard, in Somerset, was born on 26 April with transposition of the great arteries, and had open heart surgery at 12 days old.

When his mum Stacey first started researching the condition online she said she was "really scared" by all of the "misinformed, unhelpful, dated information".

"It's easy to fall down an unhelpful hole. I want there to be hope for other parents, to encourage people to talk about it," she said.

"It was an overstimulating situation, trying to learn to be a parent for the first time and having a poorly baby."

Stacey said she went to her 20 week scan "a bit naively", thinking she was just going to find out the gender of the baby.

But doctors then told her the news that Frankie had a rare heart condition, where the pulmonary artery and the aorta are switched, meaning blood is unable to reach the lungs to pick up oxygen.

"The world stopped, everything felt surreal and slow," Stacey said.

"I couldn't take any information on, you panic, you don't think it's going to happen to you."

When Stacey was researching the condition online, she found a lot of "unhelpful" information, including that the life expectancy of a baby with the condition is only 50 years.

However, the specific surgery was only introduced 50 years ago and Stacey said babies which have it are expected to have a normal life expectancy.

"It can be really scary finding those kinds of things online," Stacey said.

She added that when they first found out about Frankie's condition, they did not tell anybody.

"We were anxious it wasn't going to be OK, it's a hard conversation to have," Stacey said.

As soon as Frankie was born at St Michael's Hospital in Bristol, he was "whisked off in an incubator".

"I didn't get a chance to hold him or touch him," Stacey said.

"It wasn't how you'd expect having your first baby."

On his 12th day, Frankie had open heart surgery for eight hours to switch the arteries.

"We put him on the table, he was a tiny bean," Stacey said. "We said goodbye to him and tried to get through the day."

The surgery went "as well as it could have" and they were able to take him home after 20 days.

Since being home, and now almost five months old, Frankie has "gone from strength to strength".

"He'll have a good healthy life. He's doing really well now," Stacey said.

"You go from feeling unlucky when you first find out, to then feeling the luckiest parents in the world because it was picked up so early and staff were amazing and our little boy is happy and healthy now."

Stacey and her family are now trying to raise awareness of heart conditions in babies and have started a fundraiser for the charity Tiny Tickers, which supported them.

The charity helps families who have babies with heart conditions by providing information and training sonographers to pick up heart defects.

"It's actually something to be proud of, Frankie is so strong, he's such a fighter," Stacey said.

"When you start talking about it, you wouldn't believe the amount of people have a relatable story.

"It normalises it, it's nothing to shy away from."

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