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Our advice is to trust your instincts – you know if your child isn’t right

Claire and Shaun’s twins, Isaac and Evie, got bronchiolitis (a viral chest infection) when they were just three weeks old. In this blog and video, they share their story and their advice for other parents.

Our twins, Evie and Isaac were three weeks old when they became poorly

They had a bad cold, weren’t feeding well and their sleep was very disturbed. The first thing we did was call the doctor, who came out to visit us. He said they just had a bad cold but to monitor them for the next few days. 

A few days later, they still hadn’t improved, and both had developed high temperatures. My parents were staying with us at the time and my Mum noticed Isaac wasn’t looking well at all. At this point we called the GP and they said to bring the twins in ASAP. They were both seen immediately, and within minutes the GP had called an ambulance for Isaac, as he was barely breathing and had turned blue. 

Evie wasn’t as poorly as Isaac, but the GP suggested we take her to the hospital too. 

A respiratory paediatrician cared for Isaac, while nurses looked after Evie. We were waiting for a specialist team from another hospital to come and treat Isaac, and during this time he was being kept alive by someone manually pumping his heart for him.  

When the specialist team arrived, Isaac was taken straight to theatre to safely put breathing tubes into his airways. We were warned that he may not make it as he was very weak. 

When we were finally able to see him, he was hooked up to various machines to help him breathe. 

We were then blue lighted to another hospital 

Isaac was admitted to the paediatric intensive care unit (PICU) at the next hospital. I had to give blood so he could receive a blood transfusion and he had 24 hour care from the amazing doctors and nurses on the ward. At this point, we still hadn’t been told what they thought had happened or what it was he had. 

Luckily, we were able to stay at the hospital. It was a real life saver having a place to go and rest when things got a bit much. It also meant we could be close to Isaac if anything happened.

In the meantime, Evie was still in hospital. She was admitted to paediatrics and my Dad stayed with her. Even though Evie wasn’t as poorly as Isaac, she still needed help with her breathing and was put on oxygen and monitored regularly. We drove to see her but were worried about leaving Isaac for too long as he was in a critical condition. 

Next, we had a call from the PICU to say that Isaac had been put on a different machine to help his breathing. Things were much worse. 

Most babies with bronchiolitis will only have mild symptoms and you can look after them at home. Find out more about the symptoms, treatment and causes of bronchiolitis.

Things were up and down for quite a few days 

A doctor mentioned tests they wanted to do with Isaac and bronchiolitis was briefly mentioned, but we had no idea what it was. Meanwhile, Evie had also been tested, and they confirmed she had bronchiolitis. 

It was inevitable that this would be the same diagnosis for Isaac, however his body was going into sepsis (a life-threatening reaction to an infection) and his organs began to shut down. I can’t even remember how many machines and drugs were keeping him alive. 

Eventually, he began to turn a corner

There was still no bronchiolitis diagnosis for Isaac, as the sepsis became the most important thing to treat. Gradually they removed different machines and he became well enough for us to hold him. The difference in him was unbelievable. 

Not long after this, he was moved back to the first hospital. 

By this point, Evie had been discharged and we were told to keep a close eye on her. Isaac spent a few more days in hospital, and when he returned home, most of his original symptoms were gone. However, he had withdrawal symptoms from the morphine (a strong pain killer). It was strange to see a very young baby so wide awake – he didn’t sleep for nearly 48 hours! 

Isaacs discharge papers stated that he had bronchiolitis with overwhelming sepsis.

Life after bronchiolitis 

Isaac was seen by the first paediatric consultant that treated him a few weeks later. He then explained more fully what had happened and why. Because of Shaun being asthmatic, Isaac was more likely to be affected by respiratory conditions.

After further investigations, Isaac was eventually diagnosed with bronchiectasis. He has physio on a regular basis as well as using inhalers. As a toddler, he was frequently admitted to hospital, as every time he had a cold it went to his chest. 

Evie hasn’t had any lasting effects, and now that Isaac is much older his condition is well controlled. 

Advice from one parent to another 

I would advise parents to trust your instinct; you know if your child is not right and get help as soon as you can. We have a positive end to our story, but it could have been very different.

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5 January 2022