Bronchiolitis

Seven week old Freddy developed bronchiolitis soon after having open heart surgery. His mum, Dani, says:

“Freddy was born with a hypoplastic aortic arch with coarctation of the aorta and a large VSD (hole in the heart). He had heart surgery at six days old and was in hospital for 28 days. After being home for two weeks, he developed a chesty cough. Other symptoms soon followed, such as noticeable retractions with every breath, a change in colour of his skin and he was very sleepy because his body was tired from working so hard.

I knew something wasn’t right, so took him A&E. There, staff pressed the emergency button and Freddy was put onto oxygen straight away because his SATS were dipping really low. He had a blood test, which confirmed he was RSV positive and he spent the next six days in hospital.

Freddy needed oxygen as he was still struggling. I was told he may have to be transferred to PICU, because doctors didn’t think he was going to improve. They were planning to ventilate him. Thankfully, this didn’t happen as he started to improve.”

Eiley was born with coarctation of the aorta. Not long after surgery she developed bronchiolitis. Her mum, Chloe, shares their story:

“A few weeks after her surgery, we noticed that Eiley’s breathing wasn’t right so we immediately took her to our local A&E. She had left hospital with a very prominent stridor, but her breathing on a whole had been stable up until then. We noticed she was sucking in at her ribs, she had a tracheal tug and her head also bobbed when she breathed in. Not only that, but her breaths out were wheezy and she was very unsettled in herself which was usual for her, so all in all we were understandably quite concerned. We were transferred to another hospital and admitted for monitoring where Eiley was then diagnosed with bronchiolitis. We were told that because of her heart condition, she was more susceptible to these types of infection, but after two days of observations, Eiley was deemed safe enough to come home again (having being given open access to hospital for the next few days just in case she took another turn!)

Thankfully, she recovered quickly with lots of fluids and baby paracetamol where needed (and cuddles of course!) We may sound like broken records, but we preach to all our friends with babies that the ‘bad breathing’ is something to look out for. I can’t think of one baby book or pregnancy app that ever mentioned signs of infant breathing distress, and it is such an important sign that something isn’t right.“

Alfie was born with hypoplastic left heart syndrome. His mum, Sarah, tells us abut his experience of bronchiolitis, which he contracted before his first birthday.

The week beginning 12th July 2021, Alfie didn’t quite seem himself. He was unsettled during the night and would only sleep if he was with me. I still went to work and he came with me, as I work in a nursery. An hour or so into our day, I was informed that Alfie had been sick and just wanted cuddles, so I decided I needed to take him home.

Once home Alfie seemed okay, and after a sleep was happy enough to play. I noticed later in the day he seemed to have developed a cough, but thought this might have been a reaction from him being sick.

The next day, Tuesday, we were at hospital for a check-up and I asked our cardiologist to listen to Alfie’s chest, as his cough sounded quite chesty. She said he sounded okay and home we went.

Early hours Thursday morning Alfie was very unsettled, he was burning up, looked grey was very lethargic and extremely upset. I gave him a drink of water and then checked his temperature – panic set in as his temperature shot straight up to 38.9.

Due to Alfie’s heart condition, we have open access to the children’s ward at our local hospital so I rang them, and they said to take him in straight away. Upon getting there, Alfie remained in the same condition and after some paracetamol, he was put on oxygen as his SATS were lower than normal. He was finally able to rest his body and he fell asleep.

We were admitted and the nurses decided to move us next to the nurses station as by this point Alfie was extremely poorly, and they were very concerned. A positive result for RSV had come back from his swabs and he has also become very puffy in his face. I was out of my mind with worry – and this again was made a million times worse as I had to be there alone with Alfie – still due to COVID.

By Thursday evening, the doctor in charge was very concerned about Alfie, and by the early hours of Friday talks were in place for Alfie to be ventilated and placed in intensive care. My whole world began to crumble as everything is still so raw from his open heart surgeries. The thought of having to have him ventilated just completely broke me. I asked if there was anything else that could be done to avoid this happening. Luckily for us, Alfie began to respond to a higher dose of oxygen, with a machine called airvo (humidified high flow oxygen) and he was put on a high level of this. It seemed to help raise his SATS. Thank goodness we manage to avoid him being ventilated!

Overall we were in hospital for a week, and unable to be together. Myself and Alfie’s dad were like passing ships and we had to shift swap throughout the day to look after Alfie so the other could freshen up, eat and get some fresh air.

As the days went by Alfie seemed to get stronger and we started to see our cheeky boy returning as he was beginning to smile and giggle again, and also play with his toys. He was finally put on normal oxygen by the following Tuesday.

On the Wednesday, Alfie was taken off oxygen all together to see how he would cope, and thank God, my amazing little warrior smashed it and his SATS were now acceptable – he just had to keep it up for 24 hours.

Finally on the Thursday we were discharged and able to go home. I couldn’t wait to get home and back into a little family routine.

Things could have been so so different, I am so grateful for the open access to our local hospital and for the staff there who were absolutely amazing with us!”

“He had been suffering from a cough and cold for a few days, but is had worsened, he was wheezy and we were due to see the GP that afternoon. Around twenty minutes before our appointment, I was getting his nappy changed and putting his coat on, when I noticed he had turned blue. Flashbacks to when he was first born pre-diagnosis. I knew this was real.“

Elijah’s mum, Vicki, wrote about their experiences of bronchiolitis on our blog here.