“We said goodbye to our baby – but when the fan was turned off he breathed on his own”

A North London baby boy is now a ‘smiling 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 of Hornsey welcomed baby Jayden on November 4, 2021 after a “wonderful and uncomplicated” pregnancy.

“I couldn’t wait to meet my precious boy,” said Nia, 31. However, it soon became apparent that something was wrong. Mom Nia opened up to MyLondon on the terrifying experience: “When he came out, everyone was silent. He was blue and limp and he wasn’t crying. I looked at Francis and said, “He’s not crying.

“Immediately after he was born he was taken away, I couldn’t see him. It took seven minutes before he took his first breath – they gave him resuscitation, then they incubated him. They thought it was brain damage from lack of oxygen.

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

Nia added, “I think I was in shock, and I think everyone in the room was in shock, because no one predicted he was in distress. […] we had no idea 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 chilled to 33 degrees for 72 hours, before being reheated in an attempt to slow the process that is causing brain damage. Unfortunately, Jayden suffered several seizures during this time.

At five days old, Jayden had a MRI scan that showed severe brain damage to nearly every structure in his brain – Nia and Francis learned there was “no way” he could survive. “If he survived, we were told he would be severely debilitated, unable to feed, suck, swallow and would require ongoing care,” Nia said.

The decision was made to transfer Jayden into hospice care, and Nia’s family traveled from Wales to meet him before he died, as they sadly expected. The family was given an end-of-life room and Jayden’s parents had him baptized.

This tragic scenario was particularly 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, they were already planning to bury him with his brother.

At five days old, Jayden had an MRI which showed severe brain damage to almost every structure in his brain – Nia and Francis learned there was ‘no way’ he could survive

“My family was able to hold and cuddle him before removing the ventilator, and Francis had his first cuddle with him. Then everyone left the room except my mom, and I had skin to skin with Jayden.

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

“I remember feeling overwhelmed,” Nia said. “I cannot put into words what I felt. They still didn’t know how long he was going to breathe, and he was in hospice care at the time.

Six months later, Jayden is a smiling, talkative baby who has defied all expectations. “He’s cheeky and smiling – he really knows what he wants,” said Nia MyLondon. “He makes us laugh and smile every day. Sometimes I have to pinch myself that he’s still there.

Despite this, Jayden is significantly delayed in his development. Nia said: “He doesn’t sit, he doesn’t roll over, he can’t hold toys. We’re still in that place where we don’t know exactly, it’s still a waiting situation. It’s probably cerebral palsy, but to what extent? He’s still too young to know. He still has seizures from his brain injury.

The decision was made to transfer Jayden to hospice care, and Nia’s family traveled from Wales to meet him.

Nia and Francis are Fund raising to provide Jayden with the expert care he desperately needs. These specialized 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, physiotherapy, ABM, conductive education and hopefully stem cell therapy.

“Although some equipment and therapies are available on the NHS, it’s 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 of independence when he’s older. It’s so good that people care enough to donate.

In July, Nia, her sister and her friends will climb Pen y Fan, the highest peak in South Wales, to help Fund raising. Mum Nia explained that the family is extremely grateful for all donations, big or small.

“Jayden has already exceeded all of our expectations. We know that with each additional therapy session offered by your fundraiser, his physical and cognitive abilities improve and, most importantly, his quality of life.

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

If you have a story you think we should cover, please email [email protected]

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