In 2016 Nevaiah was born early by four weeks, and very suddenly, at a routine hospital appointment. She was starved of oxygen at birth due to complications, which means she has a brain injury. Her parents, Amandeep and Maninder, are still waiting on an official diagnosis, but they live with the fear that they could lose their little girl at any time.
“When she was born she was taken away to be resuscitated and we were told she was really poorly, said Amandeep. “We were only shown photos of her, which was really hard. We spent three months in the Neonatal Unit and we were told three times that she wasn’t going to make it. We sat in the car one night and planned our daughter’s funeral. I even went to buy her an outfit. But Nevaiah proved everyone wrong.”
Three years earlier, Nevaiah’s sister, Aveena was born 14 weeks premature. For Amandeep, looking after them both is hard. Aveena has Cerebral Palsy and brain damage from a bleed at birth. She only has one kidney and as she outgrows that, she will need a transplant. “Even pushing a wheelchair and a pushchair to the park when you are alone is tough,” said Amandeep.
“We knew we needed support and turned to Rainbows. We spent so many months in hospital, it got to the stage where we didn’t even unpack our bags when we got home.
“Initially we were concerned that no one could ever take care of Nevaiah like us. But after our first stay at the hospice, we were so shocked. It was such a safe place. We knew it was somewhere we could leave her and not have to stress about anything. Rainbows is amazing in every single way for us. We feel Rainbows listens to us when no one else does.
“The next few times we went to pick her up from Rainbows and she cried because she didn’t want to leave. The girls love to go in the Hydrotherapy Pool and Nevaiah loves Music Therapy too. During the height of Covid, Rainbows stepped up for us as our existing care package just collapsed.
“We know we always have Rainbows to fall back on and life is often scary for us,” said Amandeep. “One time Nevaiah was blue-lighted to hospital and they took her straight to ‘Resus’. She was so dehydrated and they couldn’t get an IV line into her veins so they had to drill into her bones. We were told they held out no hope and we only had around 20 minutes left with her. Again she proved everyone wrong.
“Nevaiah was fitted with a tracheostomy but because the surgery was so urgent, we only found out after that we would never hear our baby cry again, which is so upsetting. After her operation, we could see tears rolling down her face but there was no noise.
“At Rainbows the team are experienced with working with children with tracheostomies – which is so reassuring to us as we know Nevaiah is getting the best care she possibly could.
“Nevaiah is such a happy little girl, you go to her and she jumps and smiles. She will happily give anything a go to the best of her ability but she can also be so stubborn and knows what she wants, even though she can’t talk. She continues to amaze us. We were told that she would never sit unaided but she did it just after her fourth birthday. We will never stop trying with her.
“We don’t know what the future holds; it is always in the back of our minds and there are good days and bad days, we are only human. But the girls are both so happy. We give them everything a child should have and as parents, you just learn to cope. If we didn’t fight their battles, who else would?”
At Rainbows the team are experienced with working with children with tracheostomies – which is so reassuring to us as we know Nevaiah is getting the best care she possibly could.