Dad Vikas shares a powerful first-hand account of how Acorns was there when the unimaginable happened, creating memories that would last a lifetime.
“Acorns is like a protective bubble. When you’re going through your darkest times, when your child is really, really poorly, they put their arm around you without judging, without any fear, without any prejudice. It’s hard to convey all this to someone picking up a magazine or reading it in an article. It doesn’t do it justice. It doesn’t do that nurse justice, all the staff that work there, the effort that they put in.” – Vikas, Aum’s dad.
Vikas, his wife Reena and two girls Nitya and Diya were looking forward to welcoming a new member of the household – baby Aum.
It was on Diwali day, November 2015. Vikas and Reena went for a regular scan and were given the news that their baby boy Aum was very poorly and may not survive the pregnancy. The couple were told the devasting news that if Aum survived, he may live just hours or even just minutes.
Vikas explains: “The hospital said because he was going to be poorly, we had the option to terminate. But we thought, ‘we just want to meet him. Not that there is any right or wrong decision here. Aum was born and I remember he had a really loud cry. We thought, ‘we’re through, he’s going to be ok, the doctors were all wrong.’
“But it wasn’t to be, and about 48 hours later we were in Birmingham Women’s Hospital, in the neonatal Intensive Care unit. The consultant recommended we take Aum to Acorns to build some memories and that’s when we first met Acorns and a lady called Hayley – a Family Practitioner.
“Hayley told us about Acorns, and we decided that if Aum wasn’t going to get better, then why keep him in this environment where we can’t pick him up, can’t hold him, cuddle him, and he keeps getting prodded and poked with needles, bloods being taken, surrounded by noisy machines?”
Vikas and Reena, along with Aum’s big sisters Diya and Nitya who were 5 and 3 at the time, decided that it was time to go to Acorns.
Coming to Acorns
“From the moment we arrived, the staff opened the double doors and it was like a red carpet being rolled out. You just feel so special. I just remember seeing smiles on everyone’s faces. A hospice isn’t what people think. It’s not about death or dying. It’s just about whatever moments you have, making the most of them.
“It was amazing, the little touches. Even on Aum’s room, they had a little placard designed with his name. It was so nice to see his name actually written out somewhere.
“We were at Acorns for a really sad reason, but we’ve got some really happy memories. I hope that nobody ever has to use a hospice, but if they do, I think the only way you can get through it is with Acorns.”
The specially trained Care team at Acorns knew that Aum was very poorly and that time was precious for the family. They knew instinctively what to do to ensure the Vikas, Reena and the girls could make the most of every moment.
“One of the nurses said: ‘oh, we’ve got a photographer that we can call’. And a guy called Kevin came and he took photographs of all of us. Acorns arranged for a religious priest to come and give Aum a blessing.
“Reena really wanted the experience of feeding Aum her milk, but she couldn’t. We needed a breast pump but ours was at home. I didn’t want to leave him in case something happened. Acorns said, ‘it’s okay, we’ll organise it.’ They went and bought a breast pump especially for us.
“We wheeled Aum around in a pram around the hospice, with one of the nurses dragging the oxygen cylinder tanks behind us, so we could have the experience of pushing him in a pushchair.
“There was the feeling of just making you feel like nothing was too big a deal. So special. We really felt protected.”
After the previous week in hospital, Vikas and Reena were exhausted when they arrived at Acorns. A nurse at the hospice suggested they sleep, and she could place Aum in between them both. That moment became hugely significant for the family.
Vikas explains: “I was really nervous because I thought, ‘what happens if he passes away while we’re sleeping?’ The nurse turned around and she said, ‘well, what better place to go that lying in between your parents?’
“The support she gave us in that moment completely changed the way we dealt with it when he did pass. When the time came, we were in the hospice dining room and the girls were eating pizza. Aum’s breathing became really shallow and Reena put her hand on his chest and said, ‘It’s okay son if you need to go, just go’. It wasn’t hysterical, it was just calm.
“We arrived at Acorns on the Friday, and then the next evening on Saturday, Aum passed away. But in that time we did so much with him here, and it was all because of Acorns.”
The night he passed away, the Acorns nurse looking after the family asked the couple if they would like to make prints of Aum’s hands and feet, that they could keep and treasure.
“The nurse said: ‘you’ll get a very good print, because he’s only just passed, and his hands and feed are still very soft.’ It was really practical things that you don’t think of at the time, but looking back on it now you think: ‘that was so good that she did that.’ She knew exactly what she was doing. It was brilliant. It was so good the way she thought of that.”
After Aum passed away, Vikas, Reena and the two girls stayed in the flat above Acorns for 10 days until his funeral. The family even held the service before the funeral at the hospice. In that 10 days, Acorns supported the family and worked with them to create precious memories that would last a lifetime.
“After Aum passed, everything was so normalised – whatever we wanted to do. We could hold him and we could go into the special bedroom just to spend time with him in there. He had a music player on playing children’s songs.
“It gave us so much comfort because he wasn’t around for long enough; so his death is as much part of his life. Everything was just normalised and nothing was ever too much.
“On the Saturday, we spent the whole day just in the sensory room with Aum, watching the Jungle Book on the massive screen. The girls said: ‘when we watch films at home we always have popcorn!’ So Hayley from Acorns went across the road to Sainsbury’s and got some popcorn! It was amazing.
“I don’t think you could ever put a price on any of that. Acorns have given us these memories that are going to last forever. And talking about it now, it feels like it was yesterday. It doesn’t feel like it was years ago.
“The day before Aum’s funeral, we were giving him a bath. A nurse called Rachel was helping us and I was styling his hair. I said: ‘if he was here I’d put some wax in it’. And she said, ‘why don’t you do it’? So we went and got some hair wax and just put it into his hair as well.
“It was just so comforting and natural because we got to do what we wanted to do. We couldn’t have done that in the hospital. We made some really special memories that are going to be with us forever.”
Acorns gave the family whatever they needed whilst they were at the hospice. That support extended not just to their emotional and practical needs, but to their spiritual needs too.
“We borrowed some religious ‘articles of faith’ that they have at Acorns hospice, because at that time, we couldn’t get religious scriptures or anything like that. We used them and my parents used them and that was really comforting, because then it feels like home, because at home these are the things you have lying around.
“That’s just a small example of some of the things that happened at Acorns. Ever since, it feels like Acorns is always around us. It feels like Acorns didn’t care about just the poorly child, they care about the whole family.
“Words just don’t describe it. I can’t find the adjectives to describe what Acorns have done for us. It’s just amazing. Never did it feel like they were going out of their way. It was just ‘do whatever you need to do’.”
Whilst at Acorns, Vikas also recalls how Acorns supported not just him and his wife, Reena, but welcomed the whole family including grandparents, so they could meet Aum and make memories together.
Caring for the whole family
“Every time a member of our family came, the staff would say: ‘do you want a cup of tea?’ just at the right time. They’d offer sandwiches. We wouldn’t even ask, they’d just bring them in. I don’t think we could have taken as much care of ourselves at home, the way they took care of us at Acorns.
“All our meals were cooked and our washing was done. We were looked after probably more than our family could have done, because they were grieving as well. My parents were grieving because they’d lost their grandson and lost a bit of their own son at the same time.
“It was a lot for them and they weren’t in a position to look after us but they took a lot from knowing that we were being well looked after at Acorns. It was lots of comfort to them.”
Acorns was also there to provide specialist care and support to Aum’s sisters Diya and Nitya. Vikas and Reena were concerned about how the girls would cope at such a difficult and challenging time.
“For most children at that age; their first experience of death is a grandparent. It’s quite hard for them to take in. We were really worried about how they would deal with the coffin on the day of Aum’s funeral. Acorns suggested we let them decorate the coffin if they wanted to. And they did. They plastered it with Peppa Pig stickers.
“Acorns made everything normal; ‘just do what works for your family.’ Every family is different, and Acorns help support whatever your needs are.
“The girls, including Maahi who’s 5, come regularly to Acorns and they’ll use the hydrotherapy pool, play with the toys, or the electronic cars up and down the corridor. For them it’s just one big play store, they love it! Often, on Aum’s anniversary, we come here and we will just have dinner, just in the dining room, all these years later.”
Like other families at Acorns, Vikas and Reena chose to have Aum’s name inscribed on a stone which was then placed in the Acorns memorial garden; a specially designated area within the hospice gardens.
“Aum’s stone is just amazing. We come in and once a year, the girls tie a thread on his stone which is part of a religious festival called Rakhi. It’s nice because we get to be with him and remember him in his home. It doesn’t feel sad when we come here. He’s missing and he should be here, he’s not here, but Acorns really do him justice. It just feels like they’re family.”
Vikas now volunteers as a Parent Carer Champion for Acorns, sharing his views to help shape the charity’s services, and speaking at events. One of the key, overriding messages people will hear when Vikas speaks about his experiences, is that children’s hospices are not just about the end of life; there’s a lot more to places like Acorns than people might think.
“My understanding of Acorns before we used them, was that they sponsored the Villa kit, that a Hospice is a place you go to die, and it’s sad. The message that I want to get out every time I speak about Acorns is that it’s not about dying. It is about making the most of whatever time you have. It’s about support, it’s about creating memories.
“If it wasn’t for Acorns we would’ve been in the hospital. Aum would have been in his cot, not being picked up and instead being poked and prodded with needles. We wouldn’t have built any of the memories that we did and I don’t think we would’ve dealt with it the way that we have, if it wasn’t for Acorns.
“There was never sadness when we were at Acorns. Probably the only time that we were upset was on the day of Aum’s funeral. That was probably the darkest time we had. We knew we were never going to see him in physical form again.
“We never went home with Aum. Acorns is Aum’s home and that’s why I just love coming back here. We’ve got friendly faces, welcoming faces, and it just feels like it’s home.”