Arjun’s story

Baby Arjun arrives

We didn’t see her again but then a doctor appeared. He looked at the monitor and said it was an emergency and they would have to get the baby out now. We had no idea what was happening. We were in shock. They said he wasn’t breathing properly. Before he had finished his sentence the whole team ran into the room and before I knew it I was being prepped and I was signing consent forms. It was overwhelming and so rushed. My body was in total shock.

He came out, but he was silent. There were no cries. And they didn’t let me see him, he was whisked away. I kept asking if he was ok. We heard one scream, and we never heard anything from him again.

I sent my husband with our baby and I was left alone. I hadn’t even seen my baby. I caught one vague glimpse when he was wheeled past me. I was taken to a room on my own. Nobody was saying anything. I was terrified. I could never describe how I felt in that moment.

My husband came back and didn’t have anymore answers. He just told me they were working on him. The consultant arrived soon and told us our son was very unwell. He had blood coming out of his mouth, nose and ears. They told us he was very big. They said something had gone wrong in the womb and they told us he wasn’t breathing on his own. We knew then there could be damage to his brain.

He said: “What do you want us to do?” I did not respond; I was in shock and didn’t really understand the question. My husband said: “Do what you can to make him ok.” I didn’t know what I wanted to do. I couldn’t even comprehend what was happening.

It was arranged for us to be moved to Leeds, but I hadn’t even seen him yet. All I had was a polaroid of him. It was so painful that we were apart. I only had a tiny photo. I wanted to feel him, smell him, touch him. Everything I had imagined hadn’t happened. I was a new mother, but I was empty handed. That was the most painful part of all of this. I had a baby but no baby to show.

First meeting

When I arrived in Leeds, (4hrs after he had been transferred) eventually they took me down in a wheelchair to meet him. There were so many medical staff working on him. They said they didn’t know what had happened to him, but they would find out. He was filled with fluid and looked like a balloon.

They arranged a brain scan for the Monday (2 days after his birth) as he had been without oxygen at birth. His head was bulging. They needed to drain the fluid form his body and stabilize him before any further tests and scans could be carried out. On the Monday they carried out the MRI. It was not until the afternoon that they had the results, which was when we were taken into a small room where we met the consultant.

Shock of diagnosis

We sat down and I didn’t know what to expect. I was still in pain and on morphine from my surgery. They said that our son had had a massive brain haemorrhage, it was then that we heard the words I will never forget: “He will always remain in a vegetative state for the rest of his life and you will be his primary carers.”

I asked if he had cancer, I didn’t understand. It was terrifying.  The consultant began to explain what had happened in the brain, how there had been a bleed resulting in the capillaries in the brains anatomy being damaged, this had occurred in most of his brain matter. There was nothing that be done to reverse this damage, but it did mean that his life expectancy was dramatically compromised. He suspected that our son would be blind, deaf, and unable to use hos limbs independently; we would be everything to him. The consultant went away and told us we needed to digest this information. I was still confused. I didn’t understand. How could this have happened; how could this have been possible?

They were never able to find out what caused the hemorrhage. In total were remained in hospital for 4 months:  January-February in NICU then we were transferred to  SCBU at our local hospital until May, when we eventually brought him home. He was 4 months old at this point and I lived on the ward 24/7 with him. He was blind, he couldn’t feed, he would never sit, he couldn’t hold his head. He would be like a baby forever.

The day we brought him home we were informed that we were ‘taking him home to  die’ and that ‘every day was a gift’. All our preparations were leading to his death.

I was determined that he would feed, and I persisted and persisted. Eventually, he learned to suckle and it was the only pleasure he got out of life. I didn’t want this to be taken away from him. I fought my whole life to feed him. I was able to nourish him and this was huge to me. It was an integral part of who I am that I could nurture and nourish him. I maintained this his whole life. He would be fed every hour, just a tiny amount.

Life changing care at home

When he came home he required so much care. I had severe post-natal depression, and life became very difficult. When I went back to work I thought I could manage but I had a breakdown and had to take some time off. I did eventually return to my career which I loved, but eventually had to change my job slightly to make it manageable. I was always having to take time off of work because he was always sick. When he was 4 he developed epilepsy and he had severe reflux and was always being sick.

All of his care was a minefield. It was my life for 17 years. As he grew the care needs became more. It was 24/7 he could never be left. He was a 6 month baby in the body of a 17 year old. Everything was done for him.

He went to an amazing school. They were just fabulous. He went there for 14 years until he died. He would laugh and giggle there and he loved to go in their pool because he was weightless. That was a total joy.

Growing family

Now I have two more daughters, my first girl was born at 29 weeks weighing 1 pound 7, but now she is perfect. She is a typical 16-year-old teenager. And my youngest is 14. She was born at 34 weeks.

They adored their brother but I never kept any secrets from him. They knew from a young age that he wouldn’t be around forever. We never hid from that. It was a conscious decision that we would be honest with them. I didn’t want it to be a shock. They were part of that journey.

Now they are amazingly resilient and compassionate young women.

He went to sleep forever, and we were supported every step of the way

When he was 13 he was deteriorating and that is when the consultant referred us to Martin House Children’s Hospice for respite. I remember the first day when I stepped into the hospice. I thought my child is coming here to die. But it took a while for me to get my head around the fact that it was respite and it turned out to be such a wonderful thing. We were a family when we were there. The girls absolutely loved it and it was like a holiday for them. We miss that time together.

Arjun died on Valentine’s Day 2020.

One day I received another phone call at work. It was his school again By now I was being called frequently by a panicked school requesting that I came to collect him because he was so poorly or that they were calling for an ambulance because he had another seizure and was shallow breathing and non-responsive.  This time it felt different.  Intuitively, I knew then that when I left my teaching classroom that I wouldn’t be returning any time soon. I knew he was dying I suppose that’s a mother’s instinct.

We had decided that we wanted him to die at the hospice surrounded by professionals who could manage his pain, I didn’t want the girls to see him dying at home, I wanted to ensure the home was filled with happy memories with Arjun rather than where he died. He was deteriorating rapidly at home, and he had stopped eating and drinking. At this stage we were accessing both the Children’s Community Nursing Team and Martin House Hospice for his care and administering controlled pain relief drugs, which we were also taught how to administer. At this point the doctors had decided that a syringe driver was required for slow-release morphine as a pain relief but even this wasn’t helping, instead we need to increase the dosage regularly.  By now I was with him 24/7. The nights were becoming increasingly draining, I didn’t sleep for fear that he may die and I’d be asleep. I knew that we couldn’t look after him any longer and he was moved to the hospice.

We knew he would never come out. He was suffering and we knew the hospice would be the best place for him. And so, he was moved the day before he died. We were with him all the time, family visited.

On the 14th February 2020 the girls came from school. We knew he wouldn’t make it through the night. That’s when we took our final photos together as a family. The girls went to another room to go to sleep, and we cuddled in his bed. He passed away peacefully between us at 10.30pm. It was just as we wanted it. He took a breath, and he was gone, it was so peaceful. He went to sleep forever.

Grieving through lockdown compounded and magnified all our feelings. We were stuck at home. We couldn’t access support because of Covid. I had stopped working. We were in a goldfish bowl, and it was a huge challenge but we got through it because we were just in a daze, 2020 is just a blur now when I look back.

Caring for Arjun was my life for 17 years. So many appointments, so many hats to wear. I fought every day of his life for the best care for him. Now I live with a void in my life. A piece of me is gone forever. When you are caring for a child with severe disabilities you always have to be five steps ahead. Nobody will ever understand.