I’m haunted by the image of my tiny baby boy ‘on the brink of death’ with RSV – every parent MUST know the signs
MUM-of-three Lydia Johnson had never heard of respiratory syncytial virus (RSV) until her baby boy was fighting for his life with it.
Now, she wants every parent to be aware of the highly-contagious bug and its symptoms before it's too late.
The 29-year-old said: "I had no idea that RSV could be so dangerous or cause lasting damage.
"I’ll never forget the image of my son as a tiny baby in hospital hooked up to machines.
"I'd urge any parent to act quickly if their child shows any signs of difficulty breathing.
"It may well save their life."
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When Lydia gave birth to little Leo, she never envisaged he'd have any major health problems.
Both her pregnancy and the delivery had run smoothly, and she couldn't wait to introduce her bundle of joy to his sisters.
But weeks later, Leo was rushed to hospital. And within hours, he was battling to survive.
Thankfully he pulled through, but he is still suffering the effects of it now, six months on.
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RSV is common in babies and children under the age of two.
In most cases, children can be safely cared for at home. But about three in every 100 require hospital treatment to help them breathe and feed, as RSV can cause an infection of the smaller airways called bronchiolitis.
Sadly, Leo was one of the unlucky ones.
He was just six weeks old when Lydia, already mother to Sofia, four, and one-year-old Alyssia, was breastfeeding at home in Telford, Shropshire, one evening when she noticed that something didn’t seem right.
"He was sucking in at his ribs, as though he was really short of breath," Lydia said.
"I unzipped his swaddle and could see he was really struggling to breathe in.
"Because I already had children, I knew that any breathing issues should be checked out in a baby, so I told my husband Clayton to stay home with the girls while I drove Leo to the hospital."
A&E was only five minutes away, but in that time, Leo's condition deteriorated rapidly - to the point that he became floppy and turned blue.
"He was completely unresponsive, and I ran inside with him in my arms and medics came rushing over," Lydia said.
"I had no idea what was going on as he’d seemed fine all day with no symptoms of illness at all."
Doctors found that Leo’s oxygen saturation levels were incredibly low, so they put him on an oxygen machine.
"But even that wasn’t enough," his mum said.
"His skin was becoming really mottled and I was in shock watching the doctors tend to him.
"I couldn’t believe that just half an hour before I’d been putting the girls to bed and feeding Leo and now, we were in hospital, and he couldn’t breathe.";
I had no idea that RSV could be so dangerous.
Lydia Johnson
Clayton rushed to be by her side at the hospital while his mother-in-law watched the girls.
Doctors told the couple that their boy had bronchiolitis, adding that it was common in babies and Leo would probably get a little worse before he got better - but with oxygen, he should be fine.
Two days later, Leo was feeding normally again and breathing unaided, so they were allowed to take him home and told to return if there were any concerns.
"They’d given him a chest X-ray which had come back clear, so we were confident he’d be fine when we took him home that morning," Lydia said.
By dinner time the same day however, Lydia sensed something wasn’t right with Leo and she had a "gut feeling" he needed medical care.
But before they reached the children’s ward, Leo had stopped breathing completely and was floppy and unresponsive.
Staff again rushed over, putting Leo on oxygen, and fitting him with a feeding tube.
Another X-ray revealed Leo's lungs were extremely congested and he was taken to the high-dependency unit.
Desperate to know if he would pull through, Lydia asked her nurse friend if he would be OK - and to be honest.
"She told me he was the sickest baby they had there and it was then that the panic set in and I realised I could lose him," she added.
Lydia hadn't slept for three days but the shock and adrenaline kept her awake by her son's bedside.
Overnight, he took a further turn. Tests confirmed Leo had RSV and he was put on a continuous positive airway pressure (CPAP) machine.
"He just kept getting worse and worse and I felt so helpless," Lydia said.
"Then, at around 6am, he made this strange gasping sound and stopped breathing again and the nurse pulled the emergency cord.
"All I could see were tiny, pale grey legs sticking out from under the doctors’ and nurse’s arms as they tried desperately to save him.
"I ran down the corridor, hysterical. I couldn’t watch."
'WE WERE TRAUMATISED'
Lydia called her husband, barely able to speak as she croaked: "I think he’s died."
Clayton came straight to the hospital, along with other family members, and they all sobbed.
Lydia said: "Clayton is a big, strong bloke and I had never seen him break down the way he did that morning. We were both traumatised.
"When they took us through to see Leo, he was unrecognisable.
"He had this huge breathing mask over his tiny face and was really swollen. I was desperate to hold him.
"One of the doctors told us they had done all they could – they’d given Leo oxygen and were feeding him through a tube."
Leo was also put on antibiotics via an intravenous drip in case he’d also developed pneumonia or pleurisy, and for three days things remained touch and go.
Lydia slept beside him on a camp bed, singing and talking to him daily and begging him to make it. Then, miraculously, he did.
To see his little face and have him awake again was amazing.
Lydia Johnson
Gradually, he was taken off the CPAP machine and put back on oxygen until, by the third day, he could breathe on his own.
"To see his little face and have him awake again was amazing," Lydia said.
"I stared at him for hours on end just to take in his features."
After feeding on his own for 24 hours, Leo was allowed home once again and luckily, has never fallen as ill again.
But the virus has left him with ongoing health issues.
He has scarred lungs, a "permanent wheeze", and any mild virus he picks up has the potential to become bronchiolitis again.
But overall, Leo, who is now six months old, is a "bright and happy boy".
"We don’t know what the future holds for Leo and his lung health, but I’m just so glad I trusted my instincts and took him to hospital straight away when I noticed he was having breathing issues," Lydia said.
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"I had no idea that RSV could be so dangerous or cause lasting damage.
"I’ll never forget the image of Leo as a tiny baby in hospital hooked up to machines and would urge any parent to act quickly if their child shows any signs of difficulty breathing. It may well save their life."
What is RSV and what are the symptoms?
RESPIRATORY syncytial virus (RSV) is a contagious bug infects the lungs and breathing passages.
It is most common in babies and very young children.
Symptoms include:
- Difficulty breathing
- Problems feeding
- A blocked or runny nose
- Wheezing
- A dry, raspy cough
- Extreme tiredness
- A high temperature
- The skin, tongue or lips turn blue
- Floppiness or unresponsiveness
The UKHSA suggests more than 80 per cent of children will have had the virus by their second birthday.
Most can be safely looked after at home and go on to make a full recovery.
However, some babies and children are at greater risk of developing severe bronchiolitis, including premature babies, babies with existing lung or heart conditions, babies with poorly developed immune systems, and children with Down’s syndrome.
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