For my sister in law; Jamila pregnant at the time 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.

Imagine dealing with pregnancy during the global pandemic and your told your baby has little to no chance of surviving. Any parent would be devastated, they waited so long for this beautiful baby and he was taken too soon. 

My brother Abdul and sister Jamila were given the choice early on to abort the baby, when explained the reality of his condition, they were essentially told he wouldn’t survive the pregnancy, the delivery, the first hour, the first week. They were told regularly - this is it prepare yourself.

What did they do?  They fought for him, at everystage, every resuscitation, they fought. ‘Let him live, he is fighting so we will fight’.

This is what Edward’s Sydrome does - there is no cure it is predominantly palliative care. 

Edward’s syndrome is a genetic defect that results in several abnormalities in the body of the babies born with the condition. Babies with this chromosomal condition die soon after birth. There is no cure for the condition. It is also known as Trisomy 18 and affects one in five thousand live births.

Baby Mohammed Yahya had full Edward’s syndrome. This is the most severe form of the condition. The baby will die shortly after being born. The baby usually has multiple defects and organ abnormalities such as a small misshapen head, a smaller-than-average jaw, clenched fists with overlapping fingers, low-set ears and exomphalos (this is when the intestines are found in a sac outside the stomach). There may be issues with the development of the heart, lungs and spinal column as well. These babies do not survive beyond the first few months after birth.

Babies with Edwards' syndrome often have serious heart defects and attacks of central apnoea, where the brain fails to tell the body to breath. Jamila’s first experience of this was petrifying.

She added: “Mohammed Yahya 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 Yahya and give him skin-on-skin as it could be the last chance we would get.”



Demelza - A wonderful Hospice in Eltham supported the family in every way possible. 
During their three week stay, Jamila and Abdul were able to rest while Demelza staff supported with Mohammed Yahya’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. They treated his siblings 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 were back at home caring for Mohammed Yahya for about 4weeks and dealing with the emotions of having a child with a terminal condition. All of this was happening during lockdown, juggling home schooling and all of the other challenges families faced.

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.”

Mohammed Yahya sadly lost his battle with Edward’s Syndrome at Demelza on Mothers Day Sunday 14th March 2021. 

The past three weeks Mohammed Yahya struggled horribly, his apnoea was happening regularly,he barely fed and was extremely weak. 

‘Allah swt gives and he takes...he is the best of planners’

As a family, we know he was a short gift from Allah, we are happy we were able to spend a few short months with him. 

Abdul and Jamila would like to use any funds raised in honour of Mohammed Yahya’s memory by donating 100% of the proceeds to children’s charities. 

They plan to support and thank Demelza for their amazing support and dedication to the care of their baby by providing much needed items for their baby rooms. 

Please give what you can so we can help support other families the way we were supported. 

Asalaam Walaikum 

Abdul, Jamila, Zayn & Zahra x x x

Credit: https://www.news-medical.net/amp/health/What-is-Edwards-Syndrome.aspx

Credit: https://www.facebook.com/demelzahospice/