Mohammed's Story
For pregnant Jamila, the word ‘hospice’ spurred terrifying thoughts as medics talked through her options following a devastating revelation.
A diagnosis of Edwards' syndrome at her 20 week scan meant her precious baby boy was unlikely to survive the birth or pregnancy.
Jamila, 41, said: “When Demelza was mentioned I immediately felt scared. I’d heard of hospices where adults go to die; I didn’t know children’s hospices existed. After the scan, I don’t know how I managed to leave the hospital walking. It was just too upsetting.”
Baby Mohammed was born on New Year’s Eve and despite her previous fears, Jamila came around to the idea of staying at Demelza’s hospice in Eltham for step-down care, along with partner Abdul and nine-year-old twins Zayn and Zahra.
Jamila said: “The Demelza girls picked us up from hospital and welcomed us with open arms. As soon as we walked into the hospice it felt so warm and comforting. The facilities reminded us of a five-star hotel. Demelza is in a league of its own; in fact it’s out of this world. It is more than a service; they’re like family taking care of you and are all truly beautiful human beings.”
Babies with Edwards' syndrome often have attacks of central apnoea, where the brain fails to tell the body to breath. Jamila’s first experience of this was petrifying; but Demelza nurses were on hand to get Mohammed through the ordeal.
She added: “Mohamed stopped breathing and went blue; I thought he was dying. I hit the panic button and the nurses rushed in. They gave him oxygen while another comforted me. He stopped breathing another six times that day and we braced ourselves for the worst. They told me to cuddle Mohammed and give him skin-on-skin as it could be the last chance we would get.”
During their three week stay, Jamila and Abdul were able to rest while Demelza staff supported with Mohammed’s intensive care regime. Nurses equipped the couple with vital knowledge on how to feed their delicate newborn via an NG tube and advice on administering complex medication.
Mohammed’s siblings, meanwhile, were treated to fun and games and music and art therapy sessions to help them process their baby brother’s challenging situation.
Jamila said: “The twins loved their time at Demelza; for them it was like a holiday. They were given the best treatment and had the best time. At times I was just too upset to eat but the nurses persevered with me and ensured I was looked after. It felt like I was in heaven and they were my angels.”
The family are now back at their Sidcup home and are adjusting to their new normal; caring for Mohammed and dealing with the emotions of having a child with a terminal condition.
Jamila added: “It’s physically exhausting and emotionally draining; every day thinking to ourselves that it could be his last. I can’t accept he’s going to go.
“But as long as he is fighting; I am fighting with him and I know Demelza will be there to support us.”