A young boy sat in his wheelchair smiling

In August 2017, Kaleb, from Leicester, was born unexpectedly at home and just didn’t breathe.

He was rushed by ambulance to hospital but despite all of the efforts of the hospital team to resuscitate him quickly, he was left with a catastrophic brain injury and was reliant on a ventilator. His parents, Becki and Phil, were told that he would die and it was time to say their goodbyes.

“When he was born, he lay on me, limp and lifeless,” said Becki. “I remember thinking this could not be happening to me. It was as though I was an observer, watching somebody else’s trauma,” added the midwife from Ratby.

But it was real. And doctors warned her baby boy might not survive. “That’s when the tears finally came and I sobbed and sobbed,” she says. Yet Kaleb clung to life. And as each day passed Becki and Phil hoped and prayed for a miracle.

An EEG at 24 hours showed only a flicker of brain activity. And an MRI scan at seven days confirmed the result. They were told that if medical assistance was withdrawn, their little boy was likely to die, or be so disabled if he survived, he would have no quality of life.

“But we weren’t going to give up on our little boy,” she says. Day 10 was a turning point. All tubes were removed and Becki held her little boy for the first time since his birth.

“As I held him in my arms he squeezed my finger with his little hand, as if to say ‘it’s going to be OK’ – and he just kept breathing. He fought for his life, but was so small and weak,” she said.

Yet doctors feared Kaleb might only have days to live. That was when an intensive care nurse first suggested the family should consider taking their son to Rainbows where he would receive the very best in specialist end-of-life care.

“We brought him to Rainbows to die,” says Becki. “I wasn’t sure what to expect, but the welcome we received was beyond words. For the first time Kaleb was treated not as a statistic, but as a little person. They even had gifts for him. I remember thinking we had been given our first real ray of hope.”

For three weeks it was “touch and go”, says Becki. But slowly Kaleb grew stronger. Then, finally, Becki and Phil got to take their little boy home.

Kaleb, continues to make progress but his future remains uncertain. He has cerebral palsy with dystonia. His eyesight and hearing are most likely affected. Yet there are signs of development. He is alert and he smiles a lot. He loves cuddles and is starting to engage with the family and especially loves his sister, four-year-old Eden.

“We visit Rainbows regularly and are forever thankful for their love and support for the whole family,” said Becki. “They have provided us with a home of hope, a place where we can bear all in our new and uncertain journey. Nothing is beyond them, nothing is too much and you are never too broken for them.

“They are simply wonderful and we would not be here now if it wasn’t for them. Whenever we have been overwhelmed by darkness, Rainbows has provided little pockets of light.”

We visit Rainbows regularly and are forever thankful for their love and support for the whole family,