Baby boy forced to live in a 'germ-proof bubble' for months due to incredibly rare immune disorder

Baby boy forced to live in a 'germ-proof bubble' for months due to incredibly rare immune disorder

When Milo Knight was born back in February of this year, he seemed like a perfectly healthy baby boy. His first few weeks of life passed by as usual, with his parents, Tamzin and James, doting over him every minute of every day.

By the time he was two months old, however, it became apparent that something wasn't quite right. The little one had developed a cough, which - albeit not unheard of in infants - was still cause for concern. So, Tamzin took Milo to the doctor.

Initially, she was told that he had a bug, and that it would clear up on its own.

But it didn't.

"The following month, we were meant to be going on a family holiday to Cyprus," said James. "We took Milo back to the doctor to check he was well enough to go, as the cough was lingering.

"They said he’d be okay, and that it was probably just taking a little more time than usual to get over his bug."

Shortly after, though, Milo stopped drinking as he normally had been, and his most recent check-up had indicated that he had stopped gaining weight as he normally would. The parents started to become worried, and called the non-emergency number for medical advice. From there, they were instructed to take the baby boy to hospital immediately.

Milo spent three months in a sterile isolation unit (PA Real Life/Collect) Credit: PA Real Life/Collect

Once there, doctors began running urgent tests - but it would a short while before they actually had any news for Tamzin and James.

"After three days, we were called into a side room, which is never a good sign," James said.

"They told us Milo had SCID, which neither of us had ever heard of. They explained it was very rare, and very severe.

"The only two hospitals in the UK that could treat us were London’s Great Ormond Street, or Great North Children’s Hospital in Newcastle-Upon-Tyne.

"We were told not to Google the condition – but we had to. We wanted to know what was happening."

SCID stands for severe combined immunodeficiency, and causes a deficiency or malfunction of white blood cells that form the immune system.

In simple terms: baby Milo did not have a functioning immune system, making him highly susceptible to diseases and infections.

Milo in his 'bubble' room (PA Real Life/Collect) Credit: PA Real Life/Collect

Right after the diagnoses, Milo was admitted to a specialist ward at Great Ormond Street Hospital known as the "bubble ward" because of its individual high-tech sterile rooms. Tamzin and James were allowed to stay there, too.

"Before going in, the nurse told us to kiss Milo, as it’d be the last time we’d be able to do so for a while," said James. "Tazmin found that especially hard. She just broke down."

Because of how weak Milo's immune system was, the little one had to be kept in a sterile environment for three months, and what contact his parents had with him was very limited.

"You’re only allowed a set number of carers who can enter the room itself, so a lot of our family couldn’t physically touch Milo for months," Tamzin said.

"There was a park outside and, one day, James’ cousin’s little girls, who we’re really close to, came there to visit. They could only look through the window, but seeing them was so emotional. We had to wash all Milo’s clothes and toys every night, and disinfect everything. We washed our hands about three of four times, all the way up to the elbows, before being allowed in.

"We could touch him, but had to make sure he didn’t touch our faces. Worst of all, we couldn’t kiss him."

Thankfully, there was a treatment available. Milo needed a stem cell transplant and, though there were no donor matches on the system, it turned out that James' cells were suitable. In August of this year, following a week of chemotherapy to wipe out his own immune system, Milo was ready for the transplant.

The family on transplant day (PA Real Life/Collect) Credit: PA Real Life/Collect

A month later, Milo was allowed to go outside for the first time in what seemed like forever.

"He was just looking around, taking everything in," James said. "I think he’d forgotten what the outside world was like, so it was as if he was experiencing it all for the first time again."

Then, in September, Milo and his family were discharged from the bubble ward and into a halfway house so that the little one could still be monitored as he recovers.

"It was hard to see the light at the end of the tunnel, but Milo was so brave throughout. He’s made of strong stuff," said Tamzin.

"You take for granted all these little things that we’re only now able to do again, like kiss our baby and take him to the park. We’re so proud of Milo and it means so much that James could save him."

The family hope that Milo will be home properly for Christmas.