Baby born without an immune system is finally allowed home

Baby born without an immune system is finally allowed home after spending three months living inside a germ-free ‘bubble’

Milo was born with the rare disorder severe combined immunodeficiency
Newborn spent months inside a ‘bubble’, 150 miles from the family home
Got a ‘completely new immune system’ in a bone marrow transplant in August

By Alexandra Thompson Senior Health Reporter For Mailonline

Published: 15:28 GMT, 28 November 2018 | Updated: 15:35 GMT, 28 November 2018

A baby who was born without an immune system and had to live in a ‘bubble’ can finally be home for Christmas.

Tazmin and James Knight, both 28, were devastated when their son Milo was diagnosed with the rare disorder severe combined immunodeficiency at just two months old.

Unable to fight off even the mildest infection, the newborn spent months inside a sterile bubble in the Great North Children’s Hospital in Newcastle – 150 miles from his family home in Hull.

Mr Knight, an electrician, gave his son a ‘completely new immune system’ when he selflessly donated his stem cells to Milo last August.

The now nine-month-old was finally strong enough to go home on November 17 and is set to be ‘spoiled rotten’ this Christmas.

Milo was born with severe combined immunodeficiency, which left him unable to fight off even the mildest infection. He is pictured at the ‘bubble’ ward of Great North Children’s Hospital in Newcastle – 150 miles from his family home in Hull, where he stayed for months

Milo beat the condition after his father James Knight (pictured with his mother Tamzin Knight) donated his stem cells. After the procedure, the family were moved to a ‘halfway house’ where he could still be monitored. They are pictured in Plessey Woods near Newcastle

SCID is caused by a genetic mutation, which means that immune cells known as white blood cells are either missing or malfunctioning, according to the NHS.

In the past, most affected babies did not survive beyond a year, but modern treatments can now either reduce the risk of infection or cure the condition completely.

Mrs Knight said: ‘If you’d told us back in the summer that Milo would be home for Christmas, I wouldn’t have believed you.

‘There were so many hurdles for us to face it was difficult to allow ourselves to hope – yet here we are.

‘This is the best present we could have ever hoped for. Milo is our superhero and we’re going to spoil him rotten this Christmas.’

Milo seemed healthy when we was born on February 20 but, around two months later, the youngster developed a cough.

Doctors initially thought it was a harmless bug that would clear up on its own. But the cough was still lingering a month later, with health visitors also noticing his weight gain had slowed.

Milo was also refusing to drink from his bottle, despite been a good feeder before.

His anxious parents rang the non-emergency NHS number 111 and were advised to take him to the Hull Royal Infirmary.

Doctors then performed a series of tests, thinking he could have anything from a chest infection to reflux. Three days later, medics broke the news that Milo had SCID.

‘Because it’s so rare, there are only two hospitals in the UK that could treat Milo – London’s Great Ormond Street or Great North Children’s Hospital in Newcastle,’ Mrs Knight said.

‘We were transferred right away to Newcastle, 150 miles from home, with no idea how long we’d be there.’

Milo is pictured in one of the hospital’s high-tech sterile rooms, which protect patients from infection. Doctors told his parents a bone marrow transplant was his only hope of beating the disease. Milo stayed in the ‘bubble’ to ensure he was strong enough for the procedure

Pictured on the day of his transplant, Milo’s parents had to wash their hands up to four times, up to their elbows, before they were able to touch him and could not kiss their baby at all

Milo is pictured in the isolation unit, where he spent three months before the transplant

Milo was immediately admitted to the ‘bubble ward,’ which has individual high-tech sterile rooms that are designed to protect patients from infection.

‘We had one last kiss with him and had no idea when we’d be able to do that again. That was incredibly hard. I just broke down,’ Mrs Knight said.

‘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.

‘We had to wash all his clothes and toys every night, and disinfect everything. We washed our hands about three or 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.’

Pictured in hospital, he faced a setback after the transplant when he got a severe infection

Mrs Knight is pictured with Milo in hospital. She had to be careful not to touch his face. Many of his loved ones were unable to touch him at all due to only a few being allowed in his room

Pictured at home after the transplant, Milo’s immune system is still weak and he would be unable to fight off certain infections but is set to celebrate his first Christmas with his family

Milo is pictured with his parents on holiday in Cyprus just before he got diagnosed. The youngster developed a cough at two months old that had not shifted weeks later

Although the family panicked when doctors told them Milo’s only chance of a cure was a bone marrow transplant, Mr Knight was soon found to be a match.

Medics were even able to remove any potentially harmful cells from his bone marrow before transplanting it. But Milo had to spend three months in the isolation unit before he could have the procedure.

A month later, the family were discharged from the ward to a nearby ‘halfway house,’ where the youngster could still be closely monitored.

WHAT IS SEVERE COMBINED IMMUNODEFICIENCY?

Severe combined immunodeficiency is a group of rare, inherited disorders that cause abnormalities of the immune system.

This puts patients at a greater risk of life-threatening infections.

It affects one in every 50,000 to 100,000 births in the US and UK every year.

SCID-affected babies typically become ill within the first few months of their lives.

They are partially protected during the first few weeks due to antibodies passing from their mothers during the late stage of pregnancy.

Although patients used to die within the first year, modern treatment means the risk of infection can be reduced and many cases can be cured.

SCID occurs when immune cells, known as white blood cells, are missing or malfunctioning due to a genetic mutation.

Affected babies are more likely to suffer from coughs or colds during the first few months, which are often severe and long lasting.

Oral thrush, chronic diarrhoea and failure to gain weight are also common.

There are two specialist centres in the UK that treat children with SCID – Great Ormond Street Hospital (GOSH) in London and the Great North Children’s Hospital (GNCH) in Newcastle.

The first step is to provide a sterile environment that protects the child from infection.

Although parents can stay with the child, visitors must be kept to a minimum.

Antibiotics, antiviral and anti-fungal drugs are given, usually via syrups, to prevent and fight any infections.

Regular immunoglobulin therapy is also required to provide the baby with antibodies from donors.

But this is only a temporary fix with a stem cell transplant or gene therapy then being required to ‘cure’ the condition.

Source: GOSH

‘Slowly, we could go back out exploring together,’ Mrs Knight said. ‘Milo loves being in the fresh air. The first time we went out, I think he’d almost forgotten what the world looks like. He was gazing around, taking it all in.’

Milo faced a setback when he was hospitalised with an infection before suffering diarrhoea, which made it difficult for him to gain weight.

‘It was all one big waiting game,’ Mrs Knight said. ‘We desperately wanted him home, but he had to be strong enough and we had to make sure all his care was properly organised, as he would still need a lot of help outside of hospital.’

Finally, Milo had his catheter – a hollow tube inserted into a large vein in the neck, upper chest or groin to help measure blood pressure – removed on November 16.

The next day, doctors told Mr and Mrs Knight they could finally take their baby back home.

‘The drive was so surreal. Milo has lived longer in hospital in Newcastle than he did back home in Hull, so it was almost emotional leaving,’ Mrs Knight said.

‘When we pulled up at our house, our loved ones had decorated it with banners and bunting. It was an amazing moment.

‘We worried he’d struggle to adjust, but he’s his happy little self. James and I are much more relaxed and I think that’s rubbing off on him.’

While Milo’s immune system is still not strong enough to fight off any serious infections, his parents hope to give him an unforgettable Christmas.

‘We want him to do all the things other children do, like go see Santa and the Christmas lights,’ Mrs Knight said. ‘We may just need to go a different way about it, as it’s still not good for him to be around large crowds with lots of people and germs.

‘We’re going to have all the family over on Christmas day, which we can’t wait for. I felt a lot of guilt at him being so far away for so long – December 25 is going to be an emotional day for us.’

Mr and Mrs Knight have set up a JustGiving page to raise £10,000 for The Bubble Foundation, which provides medical equipment for children born with suppressed immune systems.

Their loved ones have also formed a group called Milo’s Knights, which organise all sorts of fundraising events – with England cricketer Ben Stokes even donating to the cause.

‘The Bubble Foundation is incredible. They helped us so much, and we want to give something back,’ Mrs Knight.

‘It was hard to see the light at the end of the tunnel, but we want to tell other parents to just keep looking forward to the positives. Milo was so brave throughout. He’s made of strong stuff.’

Donate here.

Pictured in the isolation unit, Milo managed to stay in good spirits throughout the ordeal

Mr Knight is pictured undergoing the stem cell transplant that ‘cured’ his son

Milo is pictured just before he left hospital, with the drive home being ‘surreal’, Mrs Knight said

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