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‘Doctors told us to say goodbye to our baby when he was just days old after he was born blue and floppy’

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A baby boy from North London is now a “smiley and cheeky” six-month-old, despite doctors saying he would never be able to smile, swallow or breathe on his own. Mum Nia Butrimas and dad Francis Allareba from Hornsey welcomed baby Jayden on November 4, 2021 after a “wonderful and uncomplicated” pregnancy.

“I couldn’t wait to meet my precious boy,” Nia, 31, explained. However, it quickly became clear that something wasn’t right. Mum Nia opened up to MyLondon about the terrifying experience: “When he came out, everyone went quiet. He was blue and floppy and he didn’t cry. I looked at Francis and I said, ‘He’s not crying.’

“Immediately after he was born, he was taken away, I didn’t get to see him. It was seven minutes until he took his first gasp – they were giving him resuscitation, and then they incubated him. They thought it was a brain injury from lack of oxygen.”

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Mum Nia Butrimas and dad Francis Allareba from Hornsey welcomed baby Jayden on November 4, 2021

Nia added: “I think I was in shock, and I think everybody in the room was shocked, because nobody had predicted that he was in distress […] we didn’t know how bad it was.” The decision was made to transfer baby Jayden to a specialist NICU where he would receive cooling treatment.

Jayden’s tiny body was cooled to 33 degrees for 72 hours, before being warmed in order to try and slow down the process that causes brain damage. Sadly, Jayden suffered multiple seizures during this time.

At five days old, Jayden had an MRI scan which showed severe brain injury in nearly all structures of his brain – Nia and Francis were told there was “no way” that he would be able to survive. “If he did survive, we were told he would be severely impaired, unable to feed, suck, swallow and will need continuous care,” Nia said.

The decision was made to transfer Jayden to palliative care, and Nia’s family travelled from Wales to meet him before he passed away, as they were sadly expecting. The family was given an end of life room, and Jayden’s parents had him baptised.

This tragic scenario was especially traumatic for Nia and Francis as they had already lost their first baby before Jayden was born. When they were told Jayden was going to pass away, they were already planning to bury him with his brother.

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At five days old, Jayden had an MRI scan which showed severe brain injury in nearly all structures of his brain – Nia and Francis were told there was “no way” that he would be able to survive

“My family got to hold him and cuddle him before they removed the ventilator, and Francis got his first cuddle with him. Then, everybody left the room apart from my mum, and I had skin to skin with Jayden.”

Then, the time came to turn off Jayden’s ventilator, which is when the doctors expected Jayden’s breathing to stop. Nia listened and waited, but baby Jayden had other plans – against the odds, he continued to breath independently.

“I remember feeling overwhelmed,” Nia said. “I can’t put into words how it felt. They still didn’t know how long he would breath for, and he was at that point on palliative care.”

Six months on, Jayden is a smiley, babbly baby who has defied all expectations. “He’s cheeky and smiley – he definitely knows what he wants,” Nia told MyLondon. “He makes us laugh and smile every day. Sometimes I’ve got to pinch myself that he’s still here.”

Despite this, Jayden is delayed in his development significantly. Nia said: “He doesn’t sit, he doesn’t roll, he can’t hold toys. We’re still in that place where we don’t know exactly, it’s still a wait-and-see situation. It’s likely to be cerebral palsy, but to what extent? He’s still too young to know. He still has seizures as a result of his brain injury.”

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The decision was made to transfer Jayden to palliative care, and Nia’s family travelled from Wales to meet him

Nia and Francis are fundraising to provide Jayden with the expert care he so desperately needs. These specialist treatments and therapies are crucial at such a young age, to help Jayden get the best start in life.

Through a Just4Children page, family, friends and members of the public can donate to help support Jayden. The money will go towards a number of therapies, including hydrotherapy, physio, ABM, conductive education and hopefully stem cell therapy.

“Although some equipment and therapy is available on the NHS, it is very limited,” Nia said. “It means the world, because these things are expensive and I think it would open up a whole world to Jayden, and give him the best chance at independence when he’s older. It’s so nice that people care enough to donate.”

In July, Nia, her sister and her friends will be climbing Pen y Fan, the highest peak in South Wales, to help with the fundraising. Mum Nia explained that the family is hugely grateful for all the donations, no matter how big or small.

“Jayden has already surpassed all of our expectations. We know that with every extra therapy session that your fundraising provides, his physical and cognitive abilities improve and, most importantly, his quality of life.”

For more information about Jayden’s journey, or to donate, click here.

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https://www.mylondon.news/news/health/doctors-told-say-goodbye-baby-24122084