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A mum whose three-year-old son has spent much of his young life in and out of hospital after being born with a rare heart condition has spoken of the “kindness, support and hope” her family receives from East Anglia’s Children’s Hospices (EACH).
Annabel Osborn’s son, Joseph, was diagnosed with hypoplastic left-heart syndrome during her 20-week scan. It meant the left side of his heart had not developed properly, leading to a series of major operations and lengthy hospital stays.
Joseph has already undergone two open-heart surgeries, at just ten days old and four months old, and faces another operation in March.
However, while his complex medical needs continue to shape family life, Annabel says the support of EACH has helped them navigate some of their toughest moments – describing the charity’s hospice in Milton as an “unequivocally positive place”.
“One of the things I love is that everyone is so kind,” she said.
“When Joseph was younger, we attended stay-and-play sessions, which were wonderful. It was a chance to spend time with people who understood exactly what we were going through.
“People make you a cup of tea, cook food and give you space to breathe.
“It feels like a safe place where we can simply be ourselves. We don’t have to pretend we’re coping brilliantly or put on a brave face. We can just be.
“They understand the medical side of things, but they also understand the emotional impact on the whole family. That makes a huge difference.
“EACH has provided counselling for members of our family and its sibling days are amazing. Having people who understand the impact of long hospital stays on brothers and sisters is invaluable.”
Because of the severity of Joseph’s condition, there have been lots of knock-on effects that his family never anticipated.
One of the biggest challenges has been the impact on his digestive system.
“We were told early on that Joseph had around a 60% chance of reaching his first birthday,” said Annabel, who is married to Francis.
“The surgeries were incredibly high-risk, and he struggled afterwards. There were some very difficult moments when things felt very touch and go.
“When he was in intensive care, his oxygen levels were so low that his gut was damaged, and he’s lived with the consequences ever since.
“He’s very sensitive to food and fluids and still needs to be tube-fed through a gastrostomy.
“The main challenge day-to-day is making sure he gets the nutrition he needs.
“He needs slow feeds for much of the day just to maintain his weight and energy levels.
“He’s stable, but there’s not a huge margin between being well and becoming seriously unwell. If he’s having a good day, he’s brilliant. But when he’s poorly, he’s really poorly.”
Including the time before Joseph was born, Annabel spent around two months in hospital and that inevitably had a huge impact on his brothers and sister – Felix, 12, Henry, ten, Louis, eight, and Genevieve, five.
“That was my biggest concern,” she said.
“I knew we were facing a prolonged hospital stay and worried about the impact it would have on them.
“Joseph had all his surgeries at Great Ormond Street Hospital, and it was there that we were referred to EACH.
“As time has gone on, it’s become something that benefits all of us, especially Joseph, but also Felix, Henry, Louis and Genevieve.
“So much of our time and energy has to be focused on Joseph’s appointments and medical needs, but his brothers and sister are incredibly understanding about that.
“The support EACH gives to siblings is so important. It gives them something positive alongside all the challenges they have to deal with, and it reminds them that they matter too.
“Life would be very different without EACH. Just knowing there’s somewhere we can turn to where people truly understand has been incredibly reassuring.”
Annabel says the best reflection of the quality of care Joseph receives is the way he reacts to spending time at Milton.
“Joseph is medically complex, so leaving him with anyone other than me or my husband isn’t straightforward,” she said.
“However, when the EACH team arrive to collect him, he’s so happy to go. That says everything.
“He’s had so many difficult experiences in medical settings that it would be understandable if he was nervous around nurses or healthcare professionals.
“Instead, he absolutely loves going to Milton.
“They somehow make it feel safe without making it feel clinical. He has the best time there.
“Sometimes they arrive to pick him up and he’s off out of the door before we’ve even said goodbye.
“Joseph loves hydrotherapy. That has been amazing for him.
“The sensory room is also brilliant. In fact, some of the older children probably enjoy it even more than he does.
“The team at the hospice are warm, supportive and kind. They’re never daunted by his medical needs, and they simply let him be a little boy.
“Despite everything he’s been through, Joseph is a ray of sunshine. He’s unbelievably resilient.
“His gastrostomy site is still painful every day, but he gets on with life. He plays with his brothers and sister, bounces on the trampoline and joins in with everything. He just cracks on.
“I’m so proud of him. He’s faced things most adults would struggle with, but he approaches life with such joy and determination.”
Annabel says she wishes people knew more about EACH, believing many have misconceptions about what a children’s hospice is like.
“People are often frightened by the word hospice, because of the associations it carries,” she said.
“If you tell someone you’re going to a hospice, their immediate reaction can be sadness.
“What people don’t always realise is how positive, joyful and life-affirming it can be there.
“Milton is an unequivocally positive place. It’s full of kindness, support and hope, and I’d love more people to understand that.
“I know EACH also provides end-of-life care and, if we ever reached that point, I’d have complete confidence in them. The care and support we’ve experienced has been exceptional.
“It’s one of the only places we’ve been where people understand without you having to explain anything. You don’t have to justify yourself and you don’t have to be cheerful and competent. You can just be yourself.”
