Two bouts of bronchiolitis and nearly six months in hospital – Donna’s story

Our third child, Leah, was born at 29 weeks because of a low-lying placenta. We had a heads up that she would be born early because I was having heavy bleeds and so I was in hospital from 24 weeks onwards. A Bliss Champion there was so helpful and kind, answering all our questions about neonatal care before Leah was born.

When Leah arrived, she was incredibly strong and, because she was a good weight, she got through her days in the neonatal unit quite well. Surprisingly, she did not need any breathing support - just help with her temperature and feeding, light therapy for jaundice and a couple of blood transfusions. We felt very lucky when all around us there were other babies facing bigger struggles.

Even so, it was a daunting and tough time. We were living in Leeds, while Leah was initially being cared for in Sheffield. That made balancing caring for her and our two boys very difficult, and it put a strain on us. It was a relief when she was transferred to the Special Care Baby Unit at Leeds, where she mastered her breastfeeding and was discharged three weeks before her due date.

I wasn’t really aware of the dangers of germs, coughs and colds for premature babies. Both our boys were born full-term and had coped well with viruses. But on Leah’s first day home, I noticed she was tired, pale yellow and had a faint cough. Her second day home proved to be the scariest of our lives. Leah turned grey and lifeless and was rushed into A&E with very low oxygen levels. I had never seen so many medical professionals around one baby, all with very concerned faces as they tried to stabilise her. I had no idea what was wrong with her – only two days ago, she had been seemingly healthy and strong enough to come home. How could she suddenly be so poorly?

She was taken to paediatric intensive care, where they diagnosed her with bronchiolitis and put her on breathing support. There were more wires, tubes and attachments on her than she had ever had during her neonatal days, but the sounds were so familiar.

I remember standing there with painfully engorged breasts, wanting to scoop her up and comfort her with a feed but, unbeknownst to me, I wouldn’t be able to for a very long time. She ultimately had to spend a fortnight in intensive care, before she was allowed onto a recovery ward and then come home.

I felt so useless while she was in the paediatric intensive care unit (PICU) that I had to fully trust the doctors and nurses caring for her. I came to learn about the machines, the medication, and what her sats meant. I read books to her and talked to her as she lay sedated and motionless.

Her little body was swollen, her eyes were tightly shut and totally unresponsive. My heart was aching for her to get better. When she was taken off her machines and medications, we were so relieved. “That’s it”, we thought, “she’ll come home and we’ll never have to go through this again”. But it turned out I was wrong.

Within another fortnight, Leah was showing similar symptoms, and had to be taken into paediatric intensive care again as an x-ray scan showed that most areas of her lungs were not working properly. What followed was probably the most traumatic experiences of our lives. Leah was diagnosed again with bronchiolitis. At first, I thought that since she had fought this once before, she would do it again, no problem.

But then I started to see babies come in with the same illness and leave, while Leah was still unresponsive. Her oxygen levels remained low, even with the ventilator, and even with the oscillator. Inside, I was wracked with worry, but I kept up a façade of positivity.

Then her consultant came to have a ‘hard talk’ with us. Leah wasn’t doing well, she informed us, and since it wasn’t clear why she wasn’t responding to treatment, they thought it might be that she wasn’t strong enough to pull through. That hit us like a ton of bricks. We were offered some counselling, which helped me to express my feelings but ultimately it could not take away what was happening.

I was feeling completely numb. My tears dried up but my anxiety levels were through the roof.

Then, for some unknown reason, Leah started to respond better to treatment. She needed to recover on the respiratory clinic for another 92 days but I could not have been more relieved. I decided to give up my job to be with Leah full-time. I worried about what the consequences of that might be financially, but after such a traumatic series of events, I couldn’t think of doing anything else. I wanted to care for her normally, feed her normally and I was prepared to be by her side for every step of her recovery in order to do that.

I was able to live with her on the ward, but that was not an easy decision to make either. I missed my sons and my husband terribly. I tried to go home in between Leah’s cares so I could spend time with them after school and try to do normal things like eat, do homework and read books together.

As our wider family didn’t live near us, we relied on various friends and relatives, when they were able to visit, to look after the boys while I was at hospital and my husband was at work. He was trying to keep everything together at home whilst I was with Leah, building a bond and hoping to help her recovery. It put so much pressure on us as a family that cracks began to show.

When it came to Christmas, the hospital staff did everything they could to make our Christmas special and even had an oxygen machine delivered to our home so we could have Christmas dinner all together. I remember pretending that everything was perfect, but inside we were totally worn out.

Not long after Christmas she was strong enough to be released from hospital with home oxygen support. That responsibility felt scary and empowering at the same time. The oxygen machine just became a part of our daily routine. However, I became very aware, and almost felt a feeling of disgust, when I heard anyone cough or sneeze near Leah. I was so scared of her picking up any bug that I avoided meeting other people.

Thankfully though, Leah is now a very happy three year old and I think the whole experience has changed our family for the better. We came through one of the most traumatic experiences any parent can ever experience and we are stronger for it.