Time running out for girl, five, who needs heart transplant

A family say they feel “hopeless” after waiting three months for their daughter to be placed on the urgent list for a heart transplant.

Brie McCann, from Robroyston, was born with Ebstein’s anomaly – a rare condition that affects the flow of blood through a valve in the heart.

It can be detected during pregnancy but in this case, it wasn’t discovered until after birth.

Her parents, Jodie and Gary, both 34, were told that Brie would need operations when she reached school age.

The five-year-old’s condition has noticeably deteriorated over the last 13 months, with her case being referred to specialists at Great Ormond Street Hospital in London.

Brie McCann was diagnosed with the rare condition after she was born. Jodie McCann

The schoolgirl was due to undergo her first of two operations on December 12, however, on the day of the surgery the medical team revealed that Brie was too unwell to go forward.

Consultants said the only option left for Brie was a full heart transplant, however, she has yet to be placed on the waiting list.

“When the consultant and surgeon came in I could tell by their faces it was bad news,” Jodie told STV News.

“They told me that the operation couldn’t be performed because they didn’t want to unalive my daughter.

“They didn’t know if she would make it out of the theatre.

The family were told that Brie was too unwell for the initial surgery. Jodie McCann

“When I asked about my options, they said the only option was a full transplant because the condition was now affecting the muscle as well as the valve.

“They said the wait could be between 18 months and two years. I was taken aback because the surgery we were here for was deemed urgent, now she is back on a retain list.

“The doctors in Glasgow say she has months before further deterioration but Brie might have to wait years for a new heart.

“It doesn’t add up.”

Brie underwent further tests to be placed on the waiting list, however three months on from their visit to Great Ormond Street, the five-year-old is still not on it.

Brie's condition deteriorated over the last 13 months. — Brie’s condition deteriorated over the last 13 months. Jodie McCann

“I feel helpless and hopeless,” Jodie told STV News.

“I’ve put my trust in so many people and I feel really let down. It has been the most stressful and awful time.

“We need everyone in this case to get moving because time is running out. Brie is getting worse day by day. We need her on the urgent list as soon as possible.

“Why is she not being treated as urgent if her life expectancy is months and not years? We need a care plan and she is not going to be another statistic.

“They’ve known about this since birth, so I don’t know why it has been left to get to this point.”

Great Ormond Street Hospital’s chief of service heart and lung, Dr Matthew Fenton has since apologised for “the worry” caused to the family and revealed work is continuing to get Brie on the heart transplant list.

“For every child we care for, our staff always have their best interests at the heart of all decision-making,” he said.

“Unfortunately, Brie was not well enough for our team to perform surgery safely.

The family have been waiting for three months for their child to be placed on the transplant list. Jodie McCann

“We are deeply sorry for the worry this has caused to the family. Our teams will continue to work with them to get Brie onto the heart transplant list and we will work with them to address any concerns.”

NHS Greater Glasgow and Clyde said it is in “close contact” with Great Ormond Street Hospital and was supporting “them in deciding on a surgical plan”.

A spokesperson told STV News: “We know this is an extremely challenging and distressing time for the family, and we recognise the importance of us continuing to provide support to them through the multidisciplinary cardiac team at the Royal Hospital for Children.

“This includes cardiology medical review as well as input from our cardiac liaison nurses and clinical psychology service.

“Today we have again offered to meet with the family to discuss how we make best use of this local support and to keep them fully informed of the next steps in their daughter’s care.”