‘Arjun’s death will always be part of me’
Manraj Kaur Sanghera, 47, from North Yorkshire, experienced grief like no other when her son Arjun died at the age of 17
I’ll never forget hearing the words, “Your son will remain in a vegetative state for the rest of his life. You will be his primary carers if he survives.” I was 25 when I found out I was pregnant with Arjun. I’d been on a journey in accepting that I might not have children after doctors found cancerous cells on my cervix. I’d also been diagnosed with endometriosis, so it was a moment of joy and disbelief for my husband and me.
My pregnancy was normal, but a week before I went into labour, I experienced contractions and some bleeding. A scan showed my baby was small, but I’m 5ft 1in so he was always going to be tiny. I was reassured it was nothing to worry about.
I was at work as a teacher when I developed the most severe cramps.
I was sent home and on 25 January 2003, my waters broke.
After having a shower and something to eat, I went to the hospital at 8am. A nurse attached me to the monitor and looked concerned. She returned 40 minutes later, gave me a cold glass of water and said, “Baby’s asleep.” I didn’t know what she meant. She came back in and soon a consultant paediatrician came in, too. They said they needed to deliver the baby. I remember signing something – I don’t recall what – and being rushed into theatre.
At 10.14am, Arjun was delivered. He let out one scream before going silent. I was terrified.
A consultant told us that Arjun wasn’t breathing when he was born and that blood was coming out of his ears, mouth and nose. They didn’t think he was going to survive.
I didn’t get to meet Arjun until hours later, but I was given a Polaroid of him. His body was filled with fluid and looked like a balloon. Being away from him was the hardest part. My body was ready to feed him, but I wasn’t with him. All those plans I’d had as a first-time mother had disappeared.
Arjun was eventually transferred to the Leeds General Infirmary, but when I visited him, he was hooked up to so much machinery that I couldn’t touch him. My arms physically ached because I hadn’t held him.
A brain scan showed there’d been a huge bleed on Arjun’s brain. I felt numb. Arjun was quadriplegic (paralysed in all limbs) and blind. To this day, we don’t know how much he understood. I still think about that. Did he know I was his mum? I think he did.
After three months, we finally took Arjun home, though doctors didn’t expect him to last longer than a year.
One day at a time
There were some precarious moments along the way. When Arjun was four, he started having debilitating seizures. At five, a “do not resuscitate” order was put in place. It was a comfort but it was also terrifying. My biggest fear was Arjun dying without me being there. I made him promise he wouldn’t do that.
He deteriorated rapidly during the last four years of his life and we were referred to Martin House Children’s Hospice. It was hard as parents to maintain a normal family life with our daughters Priya, now 15, and Simran, 17. When we put Arjun to bed at night, we didn’t know if he’d be alive in the morning.
Thankfully, for 14 years, we had help from an amazing carer.
Saying goodbye
Arjun celebrated his 17th birthday in January 2020, but the following month I was teaching Year 10 GCSE English when I got a phone call from his school saying I needed to collect him. I knew that was it.
From that point, he stopped eating and drinking. Staff from Martin House came over and I remember a nurse telling me children often need permission to go. I was ready for Arjun to go – he was in so much agony.
After a few days, we moved Arjun to the hospice. Before the ambulance came, I took a photo of myself holding Arjun’s hand, I held him and gave him permission to go. It was a moment of profound solace.
Less than 24 hours later, on Valentine’s Day, Arjun died. My husband and I lay on his bed and placed our hands on his heart. I remember counting down each heartbeat until he let out his final breath.
I knew he was gone, but I didn’t cry. I’d spent 17 years dedicated to making Arjun’s days as perfect as possible and I needed to make sure his last moments were how I wanted them to be.
I stayed with Arjun and chatted to him for a few hours, telling him all the secrets he already knew. When I came out of the room, I felt extremely nauseous so the nurses gave me the sugariest cup of tea that I’ll never forget.
The next morning, we told the girls
Arjun had gone to sleep. They were 10 and 12, but they didn’t cry. I’d always told them their brother was going to die. It was important they knew.
I promised Arjun his name would never be forgotten, so that’s what I’ve been doing for a decade. Even when he was alive, I was advocating for change. I’ve raised almost £1 million in his honour.
Grief has been hard, and last year I cried for the first time since Arjun’s death. Doing charity work, like speaking at the Together For Short Lives charity ball in London earlier this month, has helped me a lot. Even though Arjun has gone, my purpose around him still exists.
I want to show my daughters that we have the strength to get through this. I also want to show others you can find yourself after trauma. Arjun’s death will always be a part of me and I don’t want it to not be. I want the scars and the bruises. I want the broken heart because I quite like that about me now. It makes me who I am.
‘Did Arjun know I was his mum? I think he did’
TOGETHER FOR SHORT LIVES IS THE UK’S LEADING CHILDREN’S PALLIATIVE CARE CHARITY. VISIT TOGETHERFORSHORTLIVES.ORG.UK FOR INFORMATION ABOUT HOW YOU CAN SUPPORT FAMILIES LIKE MANRAJ’S