Straight from the heart

Four-year-old Loki Bourn has a rare heart defect called hyperplastic left heart syndrome, which means his mum and dad care for him tirelessly, 24 hours-a-day. Charlotte North went to meet the family to see what a difference our Children’s Home-based Short Breaks Team has made to their lives.

Left to right mum Emma, dad Ashley, Loki and support worker Zoe

Looking over at her four-year old son eagerly awaiting the arrival of his support worker, Emma Bourn feels a pang of gratitude.

“Zoe,” signed Loki with his hands. “Zoe’s car!”

A few years ago, Emma, 39, a former teaching assistant, who lives in Canterbury with Loki and husband Ashley, couldn’t contemplate trusting anyone with the care of her son. Born with a serious and rare heart defect, he needed round-the-clock care.

But, after enlisting the help of Zoe Burford, who works for the Children’s Home-based Short Breaks Team, she finally feels confident to have some ‘me’ time.

Emma said: “It took a lot of strength to accept I couldn’t do it all, but it has really changed our lives for the better.”

Emma was referred to London after her 20-week pregnancy scan was unable to clearly show her baby’s heart.

There Emma and Ashley were given devastating news.

“The consultant told us the scans had detected something called hyperplastic left heart syndrome,” Emma explained. “We’d never heard of it, but were told it was very serious. Our baby’s heart wasn’t formed properly on one side, so blood wouldn’t reach the vital organs.”

The couple learned the condition would mean childhood open-heart surgeries and, tragically, a short lifespan.

She continued: “We were told our options were termination or to give birth and the baby would need immediate heart treatment.

“I just sat there completely numb. We’d had fertility issues and it had taken eight years to fall pregnant. It felt like everything was just snatched away from us.

“We talked and researched. I had experience, because I had worked with children with disabilities. I felt like maybe I was meant to be this baby’s mum.”

It was during the height of Covid-19 restrictions when Emma gave birth via caesarean section at London’s Evelina Hospital to baby boy Loki, who was whisked off for a heart procedure hours after he was born.

She remembered: “I was able to see him really briefly, in his incubator, for just a few minutes but couldn’t hold him. It was agonising, waiting to see if he was okay.”

Loki was fed through a tube and monitored 24/7 as a baby

The pandemic made everything harder for the family. Ashley, who is 38 and works as a joiner, and Emma had to tag team staying at the hospital’s living quarters and could only see Loki one at a time.

“We were really isolated and on our own and we felt helpless.” says Emma.

Loki had open heart surgery at four days-old, which took a gruelling 12 hours. He was fed through tubes in his nose and monitored 24/7 by a team of expert specialists.

Devastatingly, after surviving the surgery, Loki then had a stroke.

Emma said: “It was just another thunderbolt. He had brain damage and they didn’t know if he’d ever walk. We just sat and sobbed.

“But Loki continued to amaze us. Doctors came many times saying there was nothing they could do, then he’d improve. We always joked he was listening and proving us wrong.”

The family finally went home in August 2020, but it wasn’t easy.

“We’d left the cocoon of the Evelina to a silent house,” said Emma. “They’d monitored everything, now it was just me and Ashley, administering 11 different medications, every two hours and feeding him through a nasal gastric tube. Nothing prepares you.”

Loki’s early years were tumultuous, with frequent rushing back to hospital, including when his left pulmonary vein closed after he caught covid, despite their efforts to be cautious and avoid it. Emma and Ashley had no time to even think about self-care; haircuts were few and far between and housework came late into the night when Loki was sleeping.

Emma explained: “When Loki turned two, someone recommended the home breaks service.

“I was resistant. There’s no way I could trust anyone to give him meds or feed him. What did it matter that I didn’t get a break?”

Loki, pictured in his Whizzy Bug adores Zoe

But, after meeting with Children’s Support Worker Zoe Burford for a chat, Emma was won over.

Emma said: “I could feel Zoe’s empathy and understanding were real.  We agreed to trial a session and at first, I just pottered about while she played with him downstairs.

“I tried to relax, but my stomach was in knots. Thankfully, Loki was absolutely fine, he adored her.”

From that point on, Zoe was booked to help with Loki one morning a week. She takes him out and about, they bake or play with toy cars and trains – Loki’s favourite things.

Using a fun motorised power chair called a Whizzy Bug, Loki zooms along to the park.  He can now eat normally and his speech is improving.

Emma continued: “I’ve taught Loki to sign and Zoe communicates well through signing. Recently, his speech has started to develop, too. He is even attending mainstream school from September.”

Loki looks forward to Tuesdays and wakes up knowing it’s ‘Zoe’s day’. He squeals when he sees her car outside.

Emma said: “Occasionally, Zoe steps in for longer than a morning. Last year, we had a full a respite day. We went to a spa which was unthinkable a few years ago.”

Loki’s health battles are not over, as he will need further heart surgery. The family do not know his life expectancy and take ‘one day at a time’.

Dad Ashley said: “Loki is the happiest little boy and that’s what matters. He’s kind, polite and loving.

“Zoe has been a lifeline, not just as a physical help, but an emotional one to Emma. They talk and share, Zoe reassures her. We are very grateful for what Zoe has done for us and how she has helped Loki.”

Zoe said: “Loki is a happy and cheeky little boy, who loves to be busy doing things. At first, he didn’t want his mum to leave the room and then one day he said ‘bye!’, wanting mum to go and play with just me.

“Not long ago, Loki came up all smiles and said the word ‘please’ verbally for the first time. He was non-verbal for so long, so it was a really special moment.

“It feels amazing knowing that we are making a difference and helping families, I honestly love my job.”