"We were shattered, when we found out our little boy had Edwards' syndrome. It is a very rare, but very serious. Babies born with the condition were usually born very small, with serious heart defects. Life for these children is often only measured in weeks or even days. We were told to expect the worst."

"Mohammed Yahya was born on New Year’s Eve 2020 at the Evelina London Children’s Hospital. It was a difficult birth, but he arrived alive. He was quiet and the nurses looked at us sadly and said there was nothing they could do for him. But Mohammed Yahya wasn’t having any of that and he started crying; a real, proper baby cry. That’s when we believed, knew even, that we would leave the hospital with him.

"We were told about Demelza – they said it was a place that could give Mohammed Yahya the care he needed. Now, we fully admit, when we first heard that word ‘hospice’ we were shocked. We both thought that meant a one-way ticket, you go in, you don’t come out again. But the nurses said no, Demelza is a lovely place and so we agreed. 

"We were utterly unprepared to move to the hospice. But Vicky and Mel from Demelza’s nursing team arrived with their bubbly personalities and we were immediately reassured. They took us to Demelza’s hospice in Eltham and we were welcomed into that warm, bright, colourful place by the whole team with open arms. We cannot describe the feeling of utter relief, the weight falling away from us – for the first time since that 20-week scan. 

"To us Demelza’s clinical team quickly became part of our family and they nursed him – cared for him – like they were all his favourite aunties. It also became clear that they had the most exceptional medical knowledge and experience of caring for babies like Mohammed Yahya. They knew exactly how to care for him and they trained us too. Nurse Sarah taught us how to cope with his apnoeas (where he would stop breathing). Thanks to Demelza, we were confident enough to be able to bring Mohammed Yahya home, for the first time, three weeks later.

"Demelza Nurse, Sarah supported us throughout our time at Demelza – 'Like all the children I see, Mohammed Yahya was unique, his condition was complex and we had to work out his care and treatments as we went along. We became used to the signs of when he was upset or in discomfort (we knew a little frowny face meant he needed us).' 

Mohammed

"Over the next couple of weeks, we were back and forth between our home and the hospice. Mohammed Yahya’s condition was up and down – and each down a little bit lower than before. By the time we came back on Saturday afternoon for our 4th, and final, visit he was really very poorly indeed. He couldn’t take any milk at all, only tiny amounts of hydration solution. The colour had drained from his skin, his breathing had become shallower. He was in pain and needed constant morphine medication. 

"Vicky was on shift for Mohammed Yahya’s final visit to Demelza... 'The last time he came in though was different. He was a lot worse, we could all tell. He had a terrible night, up all the time. Mum was holding him, skin to skin like we taught her, as much as she could. But she was asleep on her feet and desperately needed us to take over. I held Mohammed Yahya and I promised Jamila I would not put him down and that I would call her immediately if anything changed.

'In the end, he just died very quickly. No discomfort at all, he just stopped breathing. I was holding him, as I’d promised, my colleagues ran off to fetch Jamila and Abdul. They came down and I gave their baby back to them – and comforted them as best I could as they held him.'

"It comforts us to know that Vicky was cuddling him when he simply decided it was time to die. He didn’t make a sound; he just went peacefully. The nurses rushed upstairs and fetched us and we held him, but there was no regret that we weren’t there at our son’s final moment. He died with all the nurses that had cared for him were there working that day – all gathered around him. And that was all he needed. 

"Before him, we had no idea we had a local children’s hospice. But we do now, and we will never be able to do enough to support them. Please consider making a donation to The Nursing Appeal, so they can help more families like us."

 Abdul and Jamila

 

If you would like to support families like Abdul and Jamila by donating, please visit our main page for The Nursing Appeal.