Cheryl’s Story | Triplets with Bronchiolitis
After what felt like the longest 26 days in NICU we finally took our triplets home on 7th November 2019. We had been so very lucky. Their neonatal stay had just been about establishing feeding. Only one of the babies needed a tiny bit of Oxygen for a couple of hours at birth which we didn’t even see. In fact we didn’t really see anything horrific at all during our stay.
Chris had continued to go to work all the way through from the birth to their hospital discharge so that he could take his leave when we got home. It was great. We had three weeks of settling in as a family of six. Of course, it was hard work, but it was what we had waited for, for all those weeks and months before.
We were still under the neonatal unit outreach team’s care, so we were having home visits. They would come twice a week and checked the babies’ respiratory rates, temperatures and weights amongst other things. We only qualified for this service purely because they were triplets.
There were no problems or real concerns, other than the usual new-born ailments. We were almost free of medical checks, beeping machines and medical jargon. Then the babies started to get poorly, and the nightmare began
The babies had what we thought were common colds, so on the last visit from the outreach nurse, for reassurance, she granted us ‘Open Access’ to the Children’s Ward for the weekend in case we had concerns over any of the babies. This meant if we were worried about them, we could go straight to the hospital and cut out emergency doctors or A & E.
Having premature babies was a whole new world and I felt like a first-time mum again. I was anxious about keeping them safe. We had been lucky with our first born as she had barely even had a cold before, so we weren’t really used to doctors or even giving medicine.
As the weekend went on, we became more and more concerned. They were bunged up and snuffly, they were struggling to take their usual amount of milk, their breathing was erratic, and they were hard to rouse. I had saved a post to my phone from the UK Triplet and Quad Mums Facebook group about something called Bronchiolitis ages before and I kept thinking the warning signs it showed were similar to what the babies were displaying.
We had never been told about it, but my gut instinct kept bringing me back to this little image on my phone. It was getting harder and harder to get their feeds into them and a feed that would usually take 5-10 minutes was taking over an hour.
Of course, what we didn’t realise was just how poorly they were and that by trying to force them to take this big bottle of milk we were actually making their little bodies work so hard they just couldn’t breathe. They were exhausted.
Luckily, in those early days, we documented all their feeds, nappy changes and medication on a big white board so we could see the deterioration in black and white. Their breathing was rapid and the muscles under their ribs begun sucking in with each breath. It quickly declined.
I am angry that we were not officially warned about Bronchiolitis given how at risk they were. I wish I had been given the knowledge so that we could have acted sooner. I still feel terribly guilty for leaving them to struggle for as long as we did. But we just didn’t know.
It was Sunday evening, the night before Chris was due to go back to work and I had planned how I was going to tackle looking after my four children on my own for the first time! It was the 1st of December and we were halfway through putting up our Christmas tree with Betty, our then soon to be 3-year-old.
At around 4pm we decided we needed to do something – get them checked over or at least get some professional advice. Chris called the Open Access number only to be told we didn’t have access at all and would need to call 111. We couldn’t believe it. We actually needed to use the service and we were turned away.
Chris called 111 for some advice because Violet was in a really bad way and we hadn’t managed to get much food into her at all that day. He explained everything to the man on the phone but their system crashed so he had to go through everything again. More precious time wasted.
They heard the words ‘newborn premature baby’ and ‘breathing difficulties’ and instantly sent an ambulance.
Chris got off the phone and told me an ambulance was on its way. I remember saying to him,” oh that’s a bit overkill, we could just take them to A & E ourselves to get them checked over.” We didn’t want to waste their time. With that, blue light shone through the front windows and two ambulances arrived immediately, under the impression there was a baby here in cardiac arrest.
We were impressed by their speed but were very worried by this point as they began to check Violet over. Their machine couldn’t pick up what it needed to because it wasn’t geared up for babies, especially tiny premature ones so they wanted to take her in. I asked if they could take William too as he was displaying very similarly to Violet just not as severely. They agreed and Chris got the two babies wrapped up, into their car seats and off they went in the ambulance.
One of us needed to go with them and the other needed to stay with Frank and Betty. Chris is the calm, very matter of fact one and I suffer with anxiety and I panic so I stayed at home, naturally worried. At this point I thought the doctors would check them both over, maybe prescribe some antibiotics and send them home in a couple of hours. Oh, how wrong I was.
It turned out that in the ambulance on the way to the hospital, both Violet and William declined so much they both needed to be put on Oxygen. I dread to think what would have happened had we left it any longer or if Chris had driven them over there without us phoning in. I just had to wait patiently on any news from Chris.
By 7pm Violet and William were transferred, stripped semi naked and freezing cold, from A & E to the Children’s Ward. About three hours later than they could have been there if Open Access was available to us as promised but that is by the by. They were both put on oxygen via nasal pad (not tube) and went from nasogastric tube feeding straight to IV fluids while decisions were being made about their treatment.
After a barrage of questions and having the same conversations over and over again with various different medical staff, it was confirmed that they DID have Bronchiolitis, my instinct had been right and they would need to fight it for three or four days in hospital.
We were told that it is really common. Yet no one had ever mentioned it to us before, not even the Outreach nurse who had seen them 2 days before when their SATs were lower than usual.
REALLY COMMON. Two words that did not give any comfort, even after the fiftieth time someone said it to me. REALLY COMMON. For the doctors and nurses maybe but not for us. This was new. This was scary. This was happening to OUR new, tiny babies.
We just had to put our trust in the medical staff that they knew what they were doing because they had seen it so many times before. But the ‘what ifs’ always crept in. Being told it is really common doesn’t make it any easier. What if our babies were just too small to cope with this? What if the doctor isn’t on top form today? What if our babies don’t display Bronchiolitis in the ‘common’ way?!
The babies needed X-rays as a precaution to make sure it was nothing more or anything worse. William was ‘doing well’ but Violet was really, really poorly. She was on 90% oxygen but her sats were still dropping and she was stopping breathing. By 12.30am Chris was signing forms, Violet was being sedated and temporarily intubated for transportation and transport was on its way from London to take her to PICU in Southampton, where they had the expertise to look after her. An hour later there was talk of her needing a blood transfusion due to her Haemoglobin levels being low. We needed to discuss the possibility of her receiving my blood.
By 3.20am Chris and Violet had arrived in Southampton, where an intense hour went by with more form filling, more questioning and Chris watching a trainee intubate then ventilate Violet before another staff change over where a tiny bit of calm ensued. At the time we were under the impression she had been put into an induced coma. How was this happening?
We had underestimated just how unwell our babies were. Little William was left without any of his family in hospital in Chichester, Chris and Violet were over 50 miles away and I was at home with Frank and Betty. I felt so incredibly torn and guilty for not being with all of them.
The following days brought many changes, ups and downs and consequently brought a roller coaster of emotions.
The machines were breathing for Violet so her tiny body could rest enough for her to fight the infection. She was put on a concoction of drugs to help her, including Morphine and Ketamine to keep her body relaxed. They removed tubes from her throat and put them down her nose so she could be tube fed once again. This was about half the amount she had been having at home. She was stable. She had a Cranial Ultrasound scan and had to have physio because her lung was sticking to her diaphragm. She ended up having a blood transfusion of 20ml the next evening which didn’t need to be mine after all. Chris stayed with her all day, working from his phone. He needed to keep busy.
In Chichester, William was also stable and settled. He was on oxygen and IV fluids but no food. At this stage giving him food would have worked his body too much with his levels of Oxygen. His Haemoglobin levels were also low, so he was also being considered for a blood transfusion. We had Frank checked over and the doctors confirmed he too had Bronchiolitis but was doing ok at home.
By the 3rd day, Frank was now pale and struggling with his breathing. He was congested and his cough was worse. We were not going to be surprised if he ended up in hospital by the end of the week.
William was having 2 hourly tube feeds and was clearly hungry. He was on 30% Optiflow which is a mixture of air and oxygen given at a ‘high flow’ through short plastic tubes placed just inside the nostrils. He was doing well
Violet was happy asleep the entire day, just resting her body. We were told she was doing well and that her level of breathing support may be lowered. When they tried to wean her Oxygen, she didn’t respond well so they put it back up.
Southampton is a University Hospital and so we signed Violet up for a few studies and trials including The Bronchiolitis Endotracheal Surfactant Study (BESS).
Surfactant is a liquid made in healthy lungs that helps the lungs to inflate more easily. When a baby has Bronchiolitis, their lungs don’t make as much surfactant as they normally do. The study looks at whether endotracheal surfactant could help critically ill babies with Bronchiolitis to reduce the time they need to be on the Mechanical Ventilator by 18 hours or more.
Surfactant has been used in premature babies with other lung problems for over 30 years, but they don’t know if it will work in babies with Bronchiolitis. The doctors treating Violet wouldn’t know if she was given the surfactant or the air placebo because it is a randomised controlled trial.
Unfortunately, Frank was declining at home. He was no longer taking his bottles, so with a heavy heart we took the opportunity to take him in to hospital at 6am.
At first, I thought perhaps I was being overcautious as when he was checked over, he had a normal temperature, normal heartbeat (though slightly elevated) and his SATS were 100%. They would drop every now and then, but we were told it was nothing to worry about and they would keep monitoring him. My dad and I went over to the hospital so Chris could get to work, and we took Frank with us.
It wasn’t until then that we were told that one of us was expected to stay with William whilst he was in hospital. He had been in for three days already yet neither of us realised or been informed. I felt like the worst parent in the world and wondered if the nurses had been feeling sorry for him, thinking we didn’t care. Of course, we wanted to be with him but we also needed to be with Betty, Frank, Violet or at work too.
William had progressed to bottle feeding little and often but if they increased the quantity his breathing would get worse. The boys were (unofficially) in the same bed. Later in the morning when Frank was still not admitted he was quite sick, went pale and floppy and had an apnoea whilst being held by my dad. He was then taken with me to another room to be checked over when he had another apnoea in front of the nurse. This was soon to become one of the most frightening things I have ever been through.
He was going downhill rapidly. By 2.30pm Frank nearly crashed. He then had a series of about 50 apnoea’s, he was so regularly stopping breathing he would come around from one episode and go into the next. They were happening every other minute.
He was flat lining in front of my eyes and all I could do was watch. I was so scared. I was sure he was going to die.
The nurse hit a buzzer and about 20 doctors and nurses instantly flooded in. They informed me that it was looking like he needed to be intubated too and go to high dependency. The only problem was, Southampton was now full, so if he needed to be transferred it would be a case of going to Oxford – 100 miles away.
I kept it together for as long as I could.
Until the nurse in charge made it very clear that she was getting worried and didn’t agree with the consultant. I had more confidence in her than him. He was very laid back and his bedside manner had a lot to be desired. He wanted to put Frank prone (on his tummy) and see if he would recover.
I felt like he wasn’t doing anything for my son and I was aware of the conflict between the medical team. But this was real and it was my baby lying lifeless on the bed. It all got too much so I was taken out of the room where I burst into tears on my dad’s shoulder. We couldn’t believe how quickly it had all happened.
Luckily, the consultant was right. As quickly as Frank declined, he turned a corner and by putting him on his front with Continuous Positive Air Pressure (CPAP) he stabilised and managed to stay where he was in Chichester.
As a parent of four it is hard to divide yourself into four, but the thought of having four of my children in different places, miles apart, with three of them being very sick was just too much to handle.
Chris stayed at the hospital with the boys that night and although Frank was still having some apnoea’s, it wasn’t as frequent as before. He was on 40% CPAP and even though he was stopping breathing his sats remained good. This meant unless he got worse, he would stay in Chichester. A minor relief.
William was calm and settled and they believed he was over the worst of it but would be in for a few more days. The CPAP cap and tubes really annoyed Frank. He would wake up fighting and knock out the tubes but he was doing well. Violet had been extubated and was breathing on her own again, doing exceptionally well. So, after one of the worst days, it ended with fairly positive news all round.