National Heart Month: “Demelza will always hold a special place in my heart.”

Harriet is mum to Louise, Ethan and Isabella. Her daughter Louise had multiple serious conditions and was supported by Demelza until she died at Demelza’s hospice in Kent, at just eight years old. But their family’s journey with Demelza didn’t end there.

“When I was pregnant with Ethan I naturally felt anxious but was reassured by doctors; they had no reason to believe that he would have the same condition as his big sister. But our little boy was not given the easiest start in life. After being born prematurely at 35 weeks, Ethan underwent major surgery to fix a faulty valve in his heart. It was a traumatic time, and my own heart was split in two knowing that my little girl was at home needing 24-hour care. So, when the time came that Ethan only needed paracetamol, cuddles and milk, I jumped at the chance to bring him home.

“That little snippet of normality that we had all been longing for was sadly short-lived. A few weeks later he contracted bronchiolitis and was back in hospital on oxygen. In the months that followed it became clear Ethan didn’t have the best immune system and we were in and out of the GP surgery with him, while also looking after his big sister.

“After Louise died, our concerns about Ethan began to heighten. Just before he turned two, he stopped in the middle of the room, his eyes rolled up and he dropped to the floor. These vacant episodes continued at nursery and after being diagnosed with epilepsy, we sadly saw a rapid decline in him.

“We knew in our hearts that our son wasn’t going to face a straightforward future as we had originally thought. I was overcome with fear that something might happen to him. At this point we didn’t know where to turn. Ethan was in and out of hospital with no clear diagnosis. As a family we needed help.

“When we were referred to Demelza, I remember thinking: ‘Thank goodness’. Finally, we were getting some help. I was exhausted, Ethan was exhausted. I felt overwhelmed with relief but I also felt really sad: ‘How are we here again?’ All of my hopes and dreams for my son felt dashed.

“But when the Demelza team started coming to our home for visits, for the first time ever, Ethan was given the opportunity to have independence away from his parents. While he goes out and explores wonderful new experiences with Demelza’s nursing and care team, I can spend much-needed quality time with Isabella, who as a result, has really come out of her shell over the last few years. I can’t put into words how much it means to be able to give her some dedicated time.

“Since Ethan has been accessing Demelza’s services, there have been complications with his heart which will likely mean further surgeries in the future. Finding out that he has congenital heart disease has been really tough; some days you just can’t believe what is happening. There is a never-ending list to his diagnoses – a decline in muscle tone, heart, mobility and eye defects to name but a few. I sometimes compare our lives to a game of ‘Whac-A-Mole’, you think you have everything under control and then something else comes up. Demelza has held our hand and supported us throughout - having a nurse or health care assistant to talk to and share the journey with us has been invaluable.

“The future is very uncertain for Ethan. With an undiagnosed syndrome, no medical professional can now confidently say that he will go on to live a long life. Ethan requires such a high level of care and support throughout the day and night which can take its toll. Now, with the help and support of Demelza we can focus on making life as great as possible for Ethan. Whatever happens or whatever the future holds, we just want to ensure he lives his best life. Demelza will always hold a special place in my heart.”