Kartik and KSAVI's baby son, Shivai, died aged eight months from pneumonia. They talk about Shivai and how they and their son, Avi, now aged ten, were supported by Child Bereavement UK in Buckinghamshire and through their subsequent pregnancy with their third son, Kai, who is now four.

“When Avi was about two we decided that we wanted to have another child, but I kept having miscarriage after miscarriage,” says KSAVI. “I had an amazing husband and child, and a flourishing corporate marketing career, but I wasn’t happy at all. I was consumed with having a second baby.

“Shivai was born early at 29-weeks. His condition was critical, and he had to be taken to a hospital in another area of London under a blue light.

“When I was recovering from the birth, the staff came back and told us we needed to come to the room. They said Shivai was OK and had been stabilised, but that they’d had to pump adrenaline into his heart because he’d had a major relapse. We almost lost him that night, but he battled through. It was a difficult time as I had to stay at the hospital with Shivai. I felt terribly lonely and alone; not knowing if Shivai was going to make it minute by minute was tough.

“After being in hospital for three months, Shivai was allowed to come home and was developing and growing. Those months were probably the best times of our lives because we were so complete.

“When Shivai who seven and a half months, he’d had had all his immunisations and was tracking well on his percentiles. On our return he started weaning and was doing incredibly well. But then he caught his first cough and cold. He had a hospital appointment, so I asked the doctors to check his chest. They said he was totally fine and that it was just his first cold. After that I took him to the GP about three times because I didn’t like the sound of his chest. Things just didn’t seem right; he was going off his milk and didn’t want to eat.”

“Shivai was given an antibiotic which they said wasn’t essential, but we just gave it to him,” says Kartik. “And a few days later, he seemed to get his appetite back and had a whole bottle of milk and ate his food. We were due a check-up that afternoon, so we put him in the car seat, and he was OK. The surgery is a 40-second drive from home. When we arrived, I took him out of the car and he was limp and not reacting.

“I brought him into the waiting room and straight away the doctors ran out and tried to give him mouth-to-mouth resuscitation. Within minutes a paramedic came and tried to revive him for 45 minutes but couldn’t do it. The post-mortem established that Shivai had a bug that most people’s immune systems can cope with but that in him resulted in pneumonia.”

I remember saying: ‘How could this happen?  Why did life give me another child and take him away?’

“We were totally devastated,’ says KSAVI. “I remember saying: ‘How could this happen?  Why did life give me another child and take him away?’. I couldn’t understand what kind of joke had been played on us. For a long time, I couldn’t refer to Shivai as being dead, I used to say, ‘he’s passed’, ‘he’s no more’ or ‘when he went.’”

“When Shivai died, Avi was at his friend’s house on a playdate,” says Kartik. “We asked his friend’s mum to bring him to the hospital. We wanted to tell him the truth and not hide anything. So we said, ‘He’s gone to God and he’s no longer with us.’ We let Avi hold Shivai as well so he could see that he wasn’t suffering. He said, ‘He’s all cold’ and we told him the truth.

“Kartik explained that his blood had stopped circulating around his body which is why his body is starting to become colder,” says KSAVI. “He said: ‘Feel me, I’m warm aren’t I? That’s because my blood is pumping around my body but Shivai’s blood isn’t pumping anymore because he has died.’”

We made his funeral more of a celebration of his life. We did have to put our foot down quite a lot as, when he died, my family came around and my aunts sang prayer songs, and I related that to sadness. We said ‘Avi has already lost his brother. He doesn’t have to feel that his home is a sad place.’ Kartik shut it down and said if Avi wants to watch television he can, if he wants to play or eat pizza he can. Our traditional mourning period is about no television, no music. But in our house, the atmosphere was one of love because we would have Avi’s friends come around with their mums to play.

“About a month after the funeral, I found out I was expecting again. Kartik was back at work and Avi was at school. The school was incredibly supportive, they had a teacher who specialised in support and the headteacher had a budget to bring someone in to see Avi.

“However, although Avi wasn’t crying much, we noticed that he was starting to get a bit naughty. He kept saying things like ‘I don’t want to go to sleep right now because Shivai doesn’t want me to,’ or ‘I don’t want to eat my dinner because Shivai doesn’t want this’.”

“We didn’t know what to say to him. I told Kartik I was going to look for support, so I looked online where I found details of Child Bereavement UK’s helpline. I rang and they asked me some questions and said that Avi could come for support from a bereavement support practitioner. I wasn’t sure if Kartik would agree that it was a good thing to do, but he did. We were a little bit desperate by then as Avi had gone from being a caring, obedient child to not doing anything we told him. I was pregnant, we’d just lost Shivai and it was extra stress; I was at my wits’ end.

“When we came to Child Bereavement UK, we had no idea what to expect. We hadn’t had support ourselves, but we knew Avi needed support. A short while after Shivai died, Avi said some things that shocked us. He said, “One God wanted Shivai to stay, but there was another God that wanted to take him. They were fighting about who was going to keep him. The other one took him through the portal. He went from this world to God’s world.”

“We didn’t know where he got the ideas from, but he told us it was from ‘Gumball’, which is a children’s cartoon series. We had never seen it and, although we are practising Hindus, we had never talked about reincarnation. We had explained when Shivai died that his ‘ghost body had gone to God’s world’ and that what Avi was seeing was his ‘skin body’.

“Before the funeral, we took Avi for a tour of the crematorium, so he understood what was going to happen. We showed him the furnace, and this was what he thought was the ‘portal’; they were all his own concepts. We had recorded him on our phones, and we knew we needed our bereavement practitioner to hear what he had been saying.

I wanted to know how to answer Avi’s questions around death and the advice was just to tell the truth because children see things in black and white.

“At Child Bereavement UK we played games and Avi just had fun, but the conversation that emerged was quite remarkable. I wanted to know how to answer Avi’s questions around death and the advice was just to tell the truth because children see things in black and white. That was the best advice we had ever had in terms of helping Avi grieve for his brother and answering his questions.

“Kartik had already started that approach as it came naturally to him. Sometimes we felt we were exposing him too much to everything, but I thought if we hide it there could be something missing and later he might say, ‘Why didn’t you tell me?’.

“That first year of grief was hard for everybody but we were able to manage Avi’s grief in a better way. Kartik and I grieved differently, he was very quiet around grief and I was very tearful. There were some days when I’d break down and cry and cry. I was getting frustrated with Kartik because I wanted him to talk to me. He’d say, ‘I want to talk, I want to cry but nothing is coming out, I can’t do anything’.

“I cried on the day he died and didn’t cry at the funeral,” says Kartik. “Then suddenly at work I was talking to a work colleague, who wasn’t a mate, about Christmas and what we were doing. Of all the people I’d want to break down in front of he was the last person, but I broke down and started crying. I thought ‘What’s going on?’. Was it the time, place or person?  Every anniversary or birthday, we go to the crematorium and no emotions come out. But that day I cried.”

“There was a new baby on the way, and we feared there not being a heartbeat at the scan,” says KSAVI. “For the first time in my life I didn’t want to be pregnant, I didn’t want to have a premature baby again. But Kai came at full term and is now aged four.  He has started to ask about Shivai and says: ‘Where has Shivai gone?’. He knows who he is and that he’s his brother. We keep a picture of Shivai on the floor with the toys so that he’s part of the children’s lives.

Don’t fight your grief; live your emotions and let it ride out. When you push it away it just gets bigger and worse, and somewhere along the line it’s going to erupt.

“I’d say to others, don’t fight your grief; live your emotions and let it ride out. When you push it away it just gets bigger and worse, and somewhere along the line it’s going to erupt. You don’t know how, it might be a sickness, stress or a nervous breakdown. We’re both very open with each other now. If I’m having a bad day and I want to talk about it, Kartik will talk to me. He doesn’t block it off and I’m ready to hear if he wants to talk. Equally if he doesn’t want to talk about it, I’ve learned not to push him to talk.

“What I’ve learned about grief is that it comes out in different ways. In Avi it came out in being a little bit naughty and trying to use it to his advantage, in Kartik in being quite isolated and not wanting to share, then sometimes being really open and wanting to share. With me, I get super emotional and angry. And now we all have a very different relationship with death, I understand it so much more than I ever did. I’ve lost really close people I’ve loved, and I’ve never dealt with my emotions; Shivai’s death brought that all out. When I dealt with Shivai’s death, it brought out all the miscarriages and postnatal depression, all the things I’ve tried to bury.”

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