Parents whose beaming baby son continues to defy the odds have described him as their “little miracle”.
Luke Cave was only expected to live for a day – one week at best – after being born with hypoplastic left heart syndrome in March 2023.
He also has an unbalanced atrioventricular septal defect and Down Syndrome, but continues to fight and celebrated his first birthday earlier this year.
Proud parents Luke and Sarah are realistic about the long-term prognosis but describe him as a “bundle of joy” and have spoken of the “amazing” support they receive from East Anglia’s Children’s Hospices (EACH). Sarah says she would have struggled without it.
The family are regulars at The Nook, for short breaks and hydrotherapy sessions. Luke also loves spending time on the care floor and in the sensory room.
“It makes the world of difference, in terms of our sanity and wellbeing, and Luke’s genuinely happy when we come to The Nook,” said Sarah.
“It’s one place where I can sleep and I’m not constantly watching the clock, waiting for the next time I have to do something.
“Before EACH came into our lives, I didn’t fully understand what happened in a children’s hospice.
“I thought it was somewhere children went to die, whereas in reality we now realise it’s about so much more.
“When I tell people I’m coming here, they often look at me in a sad way, as though they feel sorry for me, but, for us, this has become a very happy place.
“I definitely would have struggled to get this far without EACH.
“The staff are such amazing, kind people and I can’t speak highly enough of the support we’ve received since day one.”
Hypoplastic left heart syndrome is a condition where the left lower pumping chamber – the left ventricle – of the heart does not develop properly, so is much smaller than usual.
It was detected during Sarah’s pregnancy and Luke was not expected to survive, after being born at the Norfolk and Norwich Hospital.
“We were told he’d be intubated on a ventilator straight away,” said Luke senior.
“Instead, he came out crying and there were gasps among the care team when they realised he was breathing for himself.
“Initially, we were told he might live for a day – possibly a week, at best – so that’s what we were preparing for and it was horrendous.
“It was all a bit of a whirlwind but we were determined to stay positive and hopeful.”
After seven and a half weeks at the Norfolk and Norwich Hospital, little Luke underwent open-heart surgery – having a pulmonary artery band fitted – at London’s Great Ormond Street Hospital.
He spent another six weeks there before being transferred back to Norfolk.
Although a heart transplant has been ruled out, the couple are currently waiting on a second opinion to see if further surgery might be an option.
“Luke didn’t see the sky or feel fresh air for the first six months of his life,” said Sarah.
“I didn’t go home either, until he’d been discharged from the Norfolk and Norwich.
“It was an amazing moment and I couldn’t wait until the care teams had left, so we could finally be alone with our baby.
“To still have our precious son is amazing and he really is a little miracle.
“Our lives are full on and every waking moment revolves around Luke.
“In terms of routines, the things we have to do and the machinery we have at home, every single aspect of our day is geared up to looking after him. It’s a 24-7 thing.
“Every temperature or cough makes me panic and you start to question whether it’s the beginning of the end.
“However, Luke and I support each other and give each other a lift, especially when the other is feeling low or having a down day.
“We’re a team and try to plan as best we can.
“As I say, we wouldn’t have coped without EACH. We’ve gone from preparing for end-of-life to receiving the most incredible support at The Nook.”
Luke and Sarah made a conscious decision to enjoy every moment with their son. Music, and singing, is a key part of that positivity.
“I try not to think too far into the future and live for the day,” added Sarah.
“I’m grateful for the time we’ve had but obviously I want more. Hopefully his lungs are stronger than they think.
“Not long ago, I was spending my time researching coffins rather than buggies, which was obviously affecting my mental state. I was constantly sad and stressed.
“That’s when I thought I had to start enjoying our time with Luke.
“It’s about finding the excitement and joy in things – planning in the here and now – rather than looking ahead and worrying about the future.
“I don’t want to look back and have regrets.”
Luke and Sarah make the most of every milestone, alongside Sarah’s other children, Alfie, 18, Tommy, 16, and Zay, 13.
They also have a strong support network of family members and friends who have been trained to help with the hourly feeds and medication Luke requires.
The couple illuminated their home and driveway with fairy lights at Christmas, as well as attending EACH’s Winter Wonderland at The Nook.
Unsurprisingly, they also marked Luke’s first birthday in style, celebrating with family and friends – not to mention a giant jungle-themed cake. And with the summer finally upon us, they have planted lots of flowers in their garden to create another special sensory experience.
“Luke loves being the centre of attention and is such a happy boy,” said Luke senior.
“When I see his smiling face beaming back at me, it makes everything worthwhile.
“He’s a bundle of joy. His siblings adore him and he’s fascinated by people. He loves being around others and they love spending time with him, too.
“It’s taken us a while to reach this position and get into a routine – probably six months or so.
“I had to give up work but being around all the time has made us a stronger unit.
“It’s full on and intense. Whether it’s connected to feeding or medication, someone needs to do something every hour.
“We’re surrounded by machines and alarms and sometimes you almost slip into a trance, watching him and monitoring his heartrate.
“However, we enjoy our life and make the most of every moment.
“EACH has been a huge part of that and made such a massive difference.
“When we come here, it’s a chance to chill and somewhere we know we can switch off, without any problems.
“Even if there is an issue, we know someone will come and grab us and it gives us a much-needed break, which we both appreciate so much.”
