Katie first learned she was pregnant with Albie on 11 January 2020, by which time she was already 33 weeks into a pregnancy that had flown by with no symptoms or sickness. During her first scan, there was one more surprise in store for the expectant mum – her unborn son had a double inlet in his left ventricle, a coarctation of the aorta and heart block. A whirlwind of tests, hospital appointments and decisions followed, and Katie had to adjust to becoming a mother and learning her baby would begin life with serious complications within a short time span.
“In a way it was the longest seven weeks of my life,” Katie says. “But at the same time, it felt like the shortest seven weeks too.”
Thankfully for both mother and baby, Albie’s birth was straightforward, with Katie’s mum and sister on hand as birthing partners. “There was a real sense of relief in the room,” Katie recalls. “We were all so glad he had made it through the birth as there was so much that we couldn’t know for sure until he arrived”.
The Palliative Care Team at the Evelina Children’s Hospital suggested that Demelza might be able to help Katie, and put her in touch with Teresa from Demelza’s Family Support Team. “Teresa really put me at ease,” says Katie. “She came to visit me at home before I had a tour around Demelza’s Hospice in Eltham, South East London. “When I hear ‘hospice’ it’s hard not to imagine end of life care and cancer patients,” admits Katie. “What I saw when I visited was nothing like I expected. It’s so nice here, it doesn’t feel like a place for poorly children.”
Katie and Albie were then welcomed to Demelza South East London for step-down care from hospital, giving Katie time to adjust to caring for her new born son. As Demelza’s short break and respite services have been on hold due to the Coronavirus pandemic, Katie and Albie have had the opportunity to stay together in one of our cosy family bedroom suites, with the use of the family room as their very own living room. “It’s so homely here,” explains Katie. “The rooms are so comfortable and the food is amazing. This is Albie’s home. Albie’s never known anywhere else – he’s only ever lived here.”
Katie has also found it reassuring that there’s always a helping hand for Albie if she wants to go out for a walk or even take a shower. “It’s been great having my own space to get to know my baby but also to have people who will drop in for a chat too,” Katie says. “I’ve also been lucky in that Demelza were able to arrange my mum to come and visit me as she’s been self-isolating at home. She comes in wearing a mask but is able to take it off in my room.
“We’ve also been doing lots of memory making like taking handprints, and the Care Team take photos of Albie all the time - they’ve made a scrapbook for him. We’ve had a couple of sensory Music Therapy sessions, one of which was via a video call. Albie seems to be content with watching and listening to Victoria play the piano or guitar. We’ve even made an ‘Albie’ spoon in Art Therapy to go in the wooden spoon garden!”
Providing services during a pandemic has its own new and unchartered challenges for Care Team Leader Fiona and the staff at Demelza South East London, who have had to quickly adapt to even stricter safety measures to perform their duties for vulnerable children like Albie.
“It feels quite strange to care for a child whilst wearing full protective equipment,” says Fiona. “We all expected Albie to be confused or even fearful of us coming in wearing face masks and aprons, but he just sits up and watches us. He’s so fascinated by it. It’s been lovely to see him doing so well.”
Albie’s short life hasn’t been without challenges however, and at just a few weeks old the infant was rushed into hospital for an urgent operation on a painful double hernia.
“The team at Demelza stepped in to help straight away,” Katie says.
“They were so good at calming me down and being supportive. If I’d been at home on my own I wouldn’t have known what to do. Phone calls were made and next thing we knew we were in an ambulance on our way to the hospital. It was one of the scariest moments for me because I knew there was a chance Albie wouldn’t make it through the operation, but he sailed through it. It’s been terrifying to see him go through so much in his short life already, I keep wondering what life will throw at him next.”
Whatever does happen, Katie knows that Demelza will be there to care for her and Albie.
“It’s just such an amazing support network that I’ve got here, and honestly if it wasn’t for them I don’t think I would have been able to enjoy my time with Albie as much, and just be his mum. It’s made it that much easier knowing that they’re there for us in the background if I need them so I can focus solely on him and not so much his condition. They’re like his other family in a way – they’ve all been such a big part of his life.
“I don’t really know what might happen as Albie gets older, as there’s a chance his valve might start to close. I’ll never fully prepare myself for what could possibly happen over the next few months but Demelza reassured me when I was pregnant that they would continue to support us if I needed them – all I need to do is ring up and talk to someone.”
A regular gift of just £3 could go towards the cost of a telephone call with a parent like Katie, who needs reassurance knowing that Demelza is on hand. If you can spare a few pounds every month, please visit our donate page to change lives today. Thank you