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Liverpool Echo
Liverpool Echo
National
Aaliyah Rugg

Mum's 'life was on hold' after daughter born with hole in her heart

A months-old baby born with a heart defect was rushed to surgery after "complications".

Beth and Christian Rengers found out their daughter had a large hole in her heart at their 20-week scan. But when Matilda was born, they realised how complicated things really where when she also had a leaky valve and the right side of her heart was 50% smaller than it should be.

Born in Preston in June 2022, the family - from the Lake District - were allowed home within days with the plan for Matilda to have surgery at six-months old. But she was soon rushed to Alder Hey when their new-born began to decline.

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Beth said: "We'd been home for five days and she was fine. We noticed her oxygen levels were low and at that point we went to Lancaster for two weeks where they tried to get her levels back up.

"She ended up having to go to Alder Hey and they said we'd be home in a week but she deteriorated and it was a case of growing her as much as possible for this surgery. One weekend last August she became too poorly and they couldn't wait any longer."

Beth and Christian Rengers with daughter Matilda (Liverpool ECHO)

After her surgery last summer, it was feared Matilda, now seven months old, would have to remain in hospital. But thanks to a cardiac home monitoring programme, called Little Hearts at Home, this meant the family were able to return home just days before Christmas.

Little Hearts at Home, developed by Alder Hey's innovation team, is the first of its kind in the UK and is a remote monitoring solution that enables new-born and infants with a severe congenital heart defect to receive care within the comfort of their homes.

Community nurses visit the family twice a week to record Matilda's stats via an app which is fed straight back to the cardiologist team. For the Rengers family, this has meant quality time at home with Matilda.

Beth added: "It meant we could get home sooner than we would've done. We were in hospital for six months and it was a bit uncertain, her oxygen levels were still low and can fluctuate a lot, ours are in the 90s and hers are in the 60s.

Community nurses come out twice a week to the family home in Kendall to record Matilda's stats (Liverpool ECHO)

"It alerts them straight away and the team phone and get in touch. Even if we have any worries, the information is fed back and cuts out the back and fourth from hospital."

She added: "It means we can live a more normal life. It gives us a safety blanket at home and it's been absolutely amazing.

"When you have a baby, you don't expect to spend six months in hospital, we had complications along the way and we were there a lot longer but to finally be home is amazing. You feel your life is on hold living in the hospital."

Getting emotional, dad Christian said it was "amazing" for the family to be together just in time for Christmas. Matilda, who requires oxygen 24/7, is now able to recover with her family, and only attend hospital when necessary.

Introducing the programme at the innovation centre on Thursday, February 3, staff gave an insight into the incredible things they have been working on, using technology to advance medicines. Iain Hendessey, emergency surgeon, said: "We can't stand still, we have to move forward."

Claire Liddy, director of innovation, added the team were "right at the beginning of the journey", bringing a brand new strategy allowing medical professionals to care for children wherever they are. Other technological advances in the innovation centre include the use of virtual reality in surgery and healthcare and addressing inequalities in healthcare.

Speaking about the Little Hearts at Home programme cardiologist Dr Phuoc Duong said it was about finding ways to provide "different care in different ways" with thousands of children needing help and support. It is hoped it will soon be out for wider use, across the UK and beyond, with Dr Phuoc Duong adding: "Hospitals are not the best place for children to be as they are developing and growing."

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