Mohammed Yahya’s story

"The first sign of a problem was during Mohammed Yahya’s routine 20-week scan, where it was discovered he had Edwards’s Syndrome. Life for these children is often only measured in weeks or even days.

He was born on New Year’s Day at the Evelina London Children’s Hospital. For days Mohammed Yahya stayed at the Evelina and every day that passed it became clearer that the hospital wasn’t the right place for him.

So, they told us about Demelza – and said this was a place that could give Mohammed Yahya the care he needed.

Vicky and Mel from Demelza took us to the 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.

They took us all in. Mohammed Yahya was given his own room and special Moses basket. Jamila was looked after (she had just given birth). We had the space we needed, a little kitchen to cook in if we wanted and a bed we could crash onto whenever we could grab a few minutes. They fed us (a fully Halal menu), looked after us, so we could spend every waking minute with our son.

What quickly became clear, was that the Demelza team weren’t just lovely, caring people; they also clearly 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.

Thanks to Demelza, we were confident enough to be able to bring Mohammed Yahya home, for the first time, three weeks later.

In the end, we managed at home for another three weeks. But Mohammed Yahya was becoming weaker, was struggling even more with feeding – and so we were invited to come back to the hospice. We didn’t hesitate for a moment.

We all knew that Demelza was the right place for our little boy.

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 fourth, and final, visit he was really, very poorly indeed. He was in pain and needed constant morphine medication.

Mohammed Yahya died at Demelza the next day.

Vicky helped us to bath Mohammed Yahya that one last time. She knew that our Muslim faith requires the funeral to take place within 24 hours – and she had already been in touch with a Muslim funeral director, and they invited our Imam to come and pray with us. But the thing we remember is that, after his bath, Vicky had a white cloth ready to wrap around our son’s body, as is custom in our faith. The care, the attention to detail – even after his life – was utterly extraordinary.

We had our last night together at Demelza. Vicky gave us a special ‘cuddle cot’ (which can be chilled) and it meant we could spend the night with Mohammed Yahya. After his funeral, we have stayed in touch with Demelza – and they have let us know that they are still there for us, for the twins as well, for as long as we need them.

Without Demelza’s care, we would have been broken. Thanks to them, we had three wonderful, challenging, precious months with our son. Demelza helped us to make Mohammed Yahya’s life as rich and as meaningful as possible."