Determined mum is running the London Marathon for Evelina London

Thursday 11 April 2024

Mum Rae holding Esme (right) and dad Darren holding sister Amelia (left)

A mother of two is taking on her first-ever marathon for Evelina London Children's Charity to give back to the hospital that fitted her daughter's pacemaker when she was just one week old.

Rae Dawson, 28, was told during her 20-week scan that her baby's heart rate was a third of what it should have been. Her daughter, Esmé, was consequently diagnosed with congenital complete heart block, which happens when the electrical signals cannot pass from the top to the bottom of the heart. This rare condition is most commonly, and in this instance, caused when the mother has an autoimmune condition (when the immune system attacks healthy parts of your body like an infection by mistake) and the overactive maternal antibodies cause damage to the unborn baby's heart.

After this diagnosis, Rae and Esmé required specialist care for the remainder of the pregnancy. Rae was referred to Evelina London's fetal cardiology unit where she had weekly scans. Here, women's and children's services work together to provide the best possible care for parents and children. Against the odds, Esmé's condition remained stable and she was safely delivered by C-section at St Thomas' Hospital in September 2022, weighing just 5lbs 2oz.

Esmé spent the first two weeks of her life in Evelina London's neonatal intensive care unit (NICU) which is co-located with the specialist care of maternity services at St Thomas' Hospital. To regulate her heart rate, at just one week old Esmé had surgery to have a pacemaker inserted. The device, the size of a AAA battery, was inserted behind her stomach, instead of under her collar bone as standard, due to her small size. During this time Rae, from Bexleyheath in south east London, stayed at the nearby Ronald McDonald House so she could be close to her newborn baby and see her at any time – day or night.

Esme in Evelina London's neonatal intensive care unit after her surgery

Rae explains: "After giving birth to Esmé the clinical team were so considerate and gave me a private post-natal room as everyone else had a baby with them on the ward and I didn't. Here I was able to watch the October 2022 London Marathon and all the runners going over the bridge."

Rae is running the London Marathon to help other families like her own. Rae said:

Everything that the fundraising money goes towards is going to help children like mine, and if I can raise enough money to help another family have an easier experience at a difficult time, that would be incredible.

Evelina London Children's Charity helps support the compassionate, trailblazing care of Evelina London for children and families like Esmé's every day. This includes creating a home away from home in the neonatal intensive care unit, working in partnership with Ronald McDonald House, and supporting play specialists who help bring joy to Esmé and her two-year-old sister, Amelia, at Esmé's outpatient appointments.

Esmé is now one year old and thriving. She is excited to cheer on her mum at the marathon with Amelia and dad, Darren.

Esme and Amelia at Esme's first birthday party

Rae, an office administrator, was also a patient at Evelina London when she was younger after a spinal injury. She said: "They were great when I was a kid, and care doesn't seem to falter with them.

I’m not running the marathon to prove I can do X amount of miles and that I'm an athlete. I'm doing it for a charity that changes the lives of so many children. I'm doing it from my experience and Esmé's.

Dr Will Regan, paediatric cardiologist at Evelina London, said: "At Evelina London we care for children, like Esmé, with heart problems from before they are born, through to childhood, and into adulthood. It's amazing that Rae is taking on such a big challenge to support our hospital, and the team and I wish her the best of luck."

Laura Savory, interim director of fundraising at Evelina London Children's Charity, said: "It is thanks to incredible fundraisers, like Rae, that we are able to support children, young people, and their families in the most difficult and uncertain of times. We wish Rae the best of luck in the marathon and will be cheering her across the finish line."

Visit Rae's JustGiving page to support her fundraising.

Last updated: April 2024

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