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Baby Born With Virtually No Immune System Has To Live In Germ-Proof Bubble For Months

PA Real Life

A primary school teacher has spoken about her crippling guilt after her baby boy – born with virtually no immune system – was forced to live in a bubble for months, so prone to infection she could not even kiss him.

Living in virtual isolation because of an ultra-rare immune system disorder, severe combined immunodeficiency (SCID), Milo Knight, now seven months, of Hull, East Yorkshire, received the shocking diagnosis after his worried parents sought advice over a persistent cough.

Saved thanks to a bone marrow donation from his electrician dad, James Knight, 28, he is now out of the bubble and hopes to be home for good with him and his mum, Tazmin, also 28, in time for Christmas.


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

Speaking about Milo’s ordeal, Tazmin said: “I felt incredibly guilty that family, who we’re really close to, couldn’t visit.

“There was a bell on the hospital ward we were on that children ring to signal the end of their treatment. I walked past it so many times, thinking, ‘When’s our turn?’

“Now, thanks to James saving Milo’s life, we’ve rung it. It was so emotional. I’m very proud of my boys.”


The family ringing the end of treatment bell (PA Real Life/Collect)

At first, after his birth on 20 February this year, Milo seemed perfectly healthy, going on to develop a cough when he was around two months old.

Doctors initially thought was just a bug, leaving it to clear up on its own.

“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.”


James having his stem cells harvested (PA Real Life/Collect)

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

Once home from their trip, though, Tazmin and James took Milo for his three-month check-up – and health visitors noticed his weight gain had slowed.

Shortly afterwards, he suddenly stopped taking his bottle, having previously been a good feeder.


Milo's parents hope he is home in time for Christmas

(PA Real Life/Collect)

Anxious, his parents rang NHS 111, the non-emergency number, and were advised to take him straight to A&E.

At Hull Royal Infirmary, medics began running urgent tests, thinking he could have anything from a chest infection to reflux, where a baby spits up shortly after feeding.

James continued: “After three days, we were called into a side room, which is never a good sign.”

He continued: “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.”


Tazmin with Milo on the ward (PA Real Life/Collect)

According to the NHS, SCID is caused by a genetic mutation and means that specialized white blood cells, which usually form the immune system, are either missing or not functioning properly.

At one time, most affected babies would not survive beyond a year, but modern treatments are now available to either reduce the risk of infection or cure it completely.

After the diagnosis, James, Tazmin and Milo were sent to Great North Children’s Hospital almost 150 miles from home, with no idea how long they would need to stay there.


Tazmin, Milo and James in Cyprus just before he was diagnosed

(PA Real Life/Collect)

Right away, Milo was admitted to a specialist ward known as the ‘bubble ward,’ because of its individual high-tech sterile rooms, designed to protect patients from infection.

“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.”

Doctors soon managed to determine that Milo would require a stem cell transplant – but no match was found on the official database.


The stem cells James donated (PA Real Life/Collect)

Thankfully, James was a close enough match and medics were even able to remove any potentially harmful cells from his bone marrow before transplanting it.

But Milo still had to spend three months in the isolation unit to ensure he was strong enough, and to keep him away from any infections, before having the procedure.

Tazmin explained: “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.”

It's really simple to join in with our #BubblesfortheBubble campaign, and every penny donated may help save a life.
Posted by Bubble Foundation UK on Tuesday, November 24, 2015

She continued: “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.”


Milo being cuddled by his granddad for the first time in months

(PA Real Life/Collect)

Eventually, following a week of chemotherapy to wipe out his own immune system, Milo had the transplant in August 2018.

Then, the following month, he was finally allowed outside for the first time in weeks.

James recalled: “He was just looking around, taking everything in. 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.”


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

On 10 September, the family were discharged from the ward and moved into a nearby ‘halfway house,’ so Milo could still be closely monitored.

Now, the remarkable toddler is recovering well – and James and Tazmin hope he will be home for his first Christmas.

The proud parents have also set up a JustGiving page to raise money for The Bubble Foundation, who provide equipment and fund vital research.


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

Touchingly, their loved ones have formed a group called Milo’s Knights, putting on all sorts of fundraising events – and England cricketer Ben Stokes has even donated to the cause.

“The Bubble Foundation is incredible. They helped us so much, and we want to give something back,” said Tazmin.

“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.”


Milo about to head out on his first trip outside after his transplant

(PA Real Life/Collect)

She added: “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.”

To donate, visit www.justgiving.com/crowdfunding/milos-knights

A version of this article originally appeared on Press Association.

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When you know your kids backwards and forwards, this is the best tool in your arsenal.

Getting our kids to listen to us is not always the easiest of tasks. They're willful and stubborn, but we've got a mighty weapon they are rarely prepared for: reverse psychology. Getting them to convince themselves to want to do something against their own initial intentions takes some work and a whole lot of creativity, but a little sneaky manipulation goes a long way. Here are some clever parents' tricks that are definitely worth taking notes on.

Redditor u/LeanderD Asks:

Parents of reddit, what's your best example of reversed psychology on your kids that actually worked?

He Floated His Idea Through A Back Channel

Giphy

Wanted to name my boat. Anything I would think of was dismissed as stupid by my 13 year old son. After deciding on a name, I confided to a male friend my son liked. Made my friend suggest the name as though it was his idea. My son thought the name was perfect. Done.

calypsodweller

We Always Want What We Can't Have

One of my best friends through childhood used to be punished with no salad if she misbehaved. She cherishes salad now and would always try to eat as much as possible during school lunch. Coincidentally, her now husband used to be punished with no books, it had the same effect. I think it's hilarious that they'd be hitting the salad bar and library like some black market their narc parents couldn't reach hahaha.

cookiearthquake

A Deceit That's A Cut Above The Rest

Giphy

Don't know if this counts, but, at my high school (private, boys only) in the 1960's, they made a big deal about how long your hair was, and would occasionally order a boy to go home and "get a haircut".

I thought it was stupid, until years later, a master confided to me at a reunion that the policy was deliberate. The school figured we'd spend so much energy rebelling about hair length, that we would ignore other aspects of teenage rebellion. (Not?) Surprisingly, they were mostly right.

FrankDrakman

Damn! That's smart. Wow.

fangxx456

Oh they don't like long hair?

I'll show them. I'll grow my hair out as lon- what?! No I don't want to go "party"? I gotta try out this horse shampoo.

DankeyKang11

The Forbidden Book

Hi I was a victim,

There was a forbidden book that I was not allow to read on the shelf. My parents said I could only read it if I behave myself.

It was summer holidays and I was playing games all day (after 6 hrs of summer homework). One day I was home alone and had the opportunity to grabbed it. I read like half of it in one go. It was 5000 years of Chinese history.

Safe to say I was bamboozled.

oddstodd

Flowers Of The Queen

My parents always told me my broccoli were the flowers of the queen and that I really shouldn't eat them, or else the queen would get very upset! I, of course, ate the whole broccoli in a few seconds.

Subwoofy

I'm telling the queen and she's gonna be pissed

draculacletus

Sleeping Beauty

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I taught my kids when they were toddlers that no amount of yelling, shaking or hitting can wake a sleeping adult. The only thing that works is a gentle hug and/or a nice kiss on the cheek.

Edit: Probably needed some more details for the reverse psychology aspect to be clear. It went something like this - Step one, tell the kids I'm going to sleep and nothing they do will wake me (head buried face down is the safest position). Step two, after the initial onslaught dies down pretend to awaken on your own. Tell them you got a bit of nap left in you and nothing can wake you, especially not hugs and kisses.

DrMethusael

Holy sh*t...if my daughter woke me up like this I would buy her a pony.

All-Seeing_Elon

I am saving this comment because this will save lives if I ever have kids, stg.

smerter

A Walk In Someone Else's Shoes.

Split custody with my ex. When my son was around 10, he visited two weekends a month. I was waiting tables and didn't have a huge amount to spend, but he was so needy from divorce (and I'm not blaming him, it was ugly), he begged constantly for MORE when he was with me. Whatever more was, it didn't matter... he'd be eating ice cream cone and begging for teriyaki.

I finally realized that he just felt empty, and getting MORE whatever from me wasn't filling him up. His next visit I handed him $100 in cash and told him it was our food/fun budget for 3 days and two nights, and he was in charge of it. I bought him his own wallet to carry. We figured out how many times we were going to eat and what we were going to do, and he paid. He got to keep whatever money he had left...thought he was rich...then realized just how much everything cost. Well. Shoe on other foot then. If we had no money for food, we ate leftovers - and I didn't contribute more to pot. After a few weekends of running short or not getting something he actually wanted because he was foolish with funds, he started to really think about how to spend that money. He budgeted and kept to his budget. And a few times he actually went home with a little cash for his private stash.

Many years later, he thanked me for this. It really changed the way he thought about money and love.

Augumenti

This Is Worth Giving A Shot

Took my 3 year old son to one of those doctor's visits where he was going to get a shot. He was worried about the shot on the whole drive over, almost to the point of tears. We get to the doctor's office and a nurse subtly lets me know that my son is not just scheduled for 1 shot, but 5 of them in the same visit.

I turn to my son with an exaggerated smile and tell him, "Good news! They figured out how to take that one big shot you were going to get and instead break it up into these 5 little tiny shots so it won't hurt nearly as much!"

You could see the relief wash over his face. He stopped squirming and relaxed completely. He took the first shot and even smiled and said "It's true! The small ones don't hurt!"

We actually made it through the third shot before the effect wore off and reality kicked in. Still... I counted it as a victory.

blackbird77

Put This To The Taste

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My mom would tell me she only lets me eat soup after candy and she'd only buy me candy that i didn't like. After a few times, i stopped trying and begged her to let me eat soup first. She gave me a smirk and told me go ahead. This doesn't sound as evil as it was. But trust me i suffered.

turkeypr0

So what was the candy?

Poster_Main

Mint chocolate, raisins, stuff like that. I still hate them to this day. Who the f--- thought while eating chocolate "hmm id like some tooth paste with this."

turkeypr0

This is Truckin' Awesome

Mum had sworn a bit around the house.

When 4, while out at the supermarket, I said F word really loudly.

Very quickly and intently, she asked if I had just said "Truck" and said that was a bad word and not to ever say Truck like that again.

I thought that was the bad word so used that when being naughty.

GodOfTheThunder

The "Silly Mom" Routine

The "Silly Mom" routine.

My kid, and a few other kids I've known, would balk at getting ready to go. I'd grab their clothes and say, "Well, if you won't put on your clothes, I guess I'll put on your clothes. Cute shirt, by the way! Does it go on my foot?"

NO!

"Does it go on my head?"

NO! IT GOES ON ME!

"Oh, that's right, thanks! So, it must go on your legs, right?"

NO!

"I just can't figure this out! Where does this adorable shirt go?"

[kid grabs shirt and puts it on] ON MY TUMMY! SILLY MOM!

"Oh, thank you so much! Now what about these pants? Shirts go on tummies, so...the pants go on the tummy, too, right?"

NO!

[continue until kids have dressed themselves]

I would also do things like hand the kid my keys and say, "Alright, you're driving, I'll sit in the booster seat in back," attempt to feed the kid by putting a spoon up to his ear or his belly button, and attempt to put away his toys in the refrigerator.

insertcaffeine

Some Foot For Thought.

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My mum would always yell at us "if you don't do X, you have to go to bed without socks!"

I never wore socks anyway, and I'm ashamed to admit that this worked.

Splittsky

That would work really well on my son, or make him cry for a really long time... He's 3 and over the last few weeks has decided that he is fully unable to sleep without socks on.

PJQueen

Toddlers man. Completely unpredictable.

SheaRVA

I'm Greens With Envy

My mum had a friend that would put vegetables on her own plate and not the kids.

When the kids asked she would be reluctant to share, "that's grown up food. But I suppose I can let you have a little."

Her kids grew up loving vegetables.

I sat at the dinner table for 3 hours staring at the yucky cauliflower I refused to eat.

laik72

This reminds me of an instance when my child convinced my wife and myself to change our plans for dinner. We were in a grocery store to pick up something quick and easy to eat that we wouldn't have to prepare. Our daughter, wanted none of that, she demanded that she wanted a salad from the salad bar. We started to argue back, but then realized: "Our child demands that we feed her vegetables for dinner instead of a microwaved meal, why are we saying 'No?'"

We had salad for dinner that night.

Galaxy_Ranger_Bob

The Power Of Choice

I don't so much know if you would call it reverse psychology, but I didn't realize it until my dad told me this.

When there were chores that needed doing, he noticed if he asked me to mow the lawn, I would complain and procrastinate. But if he asked would I rather mow the lawn or wash the windows, I'd pick one and just get it done.

Shattered my brain when he told me when I was in my twenties. I use it when I'm coaching or baby sitting all the time and it almost never fails.

AppealToReason16

The Boy Who Cried 'Ouch'

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I've done this one with tens of kids. Any time a kid gets "hurt" (falls down on grass, gets gently hit in the face with a ball, etc.) instead of stopping the activity to pick the kid up and see if they're ok you just scoot them off to the side and resume. Within 10 seconds of not getting all the attention and seeing the fun is resuming they pop right back up and are magically healed.

This of course is only for the "injuries" that aren't actually injuries.

pedanticProgramer

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