"Paediatric Patient Disappointment in ED"

My infant child had been having severe pain in their abdomen and blood in their stools for a few weeks. They were suspected of having an intolerance to cow's milk and therefore, I adjusted my diet while breastfeeding. Although, after receiving the rotavirus vaccine from their GP, their abdomen pain increased over a few days and I presented back to the GP clinic, who were all very helpful and observed my child for a short time.

My infant also has a severe congenital heart defect which has been managed by the cardiac team at Princess Margaret Hospital and a cardiologist who we see at St John of God Bunbury; all of whom do an exceptionally incredible job in their care and who we are forever grateful to. My infant was in a critical time of their life having had already undergone one major heart surgery at a few days old and was awaiting a second heart surgery soon to come.

Given my infant’s history and the risk of an intussusception of the bowel from the vaccine, the GP clinic thought it was wise that we present to the ED and wrote a letter for my infant to be reviewed by the paediatric team while there.

We presented to the ED early that evening. The ED was very busy, although the staff were doing the best that they could do to get all patients seen and given a triage to wait. They were very patient and took the time to listen to our story and observe my infant appropriately, I commend them on that and cannot imagine how hard it is to work under the pressure of such a demanding area. My infant was given a triage 3 (to wait for 30 minutes) due to the bowel risk and also their complexity. Having the heart condition means that their oxygen sits at a lower scale than it should (around 85% O2) and when they cry, those levels drop even further (40-60% O2). We are recommended by specialists to reduce their crying, although while my infant is in pain, this can be a difficult task. The triage nurse explained to us that the department was very busy and while we might not get in to see a doctor within 30 minutes, that they would come and check on my infant and take their observations every 30 minutes instead. I was very happy with the nurse’s precautions and appreciated their efforts.

However, we did not get in to see the doctor until a 90 minute wait and unfortunately no one had been to check on or observe my infant during which time they had still been in extreme pain. I do however understand how busy the waiting room was and so can appreciate that time might have slipped away, although it was disappointing that being such a high risk and complex patient, my infant had simply been lost in the crowd.

We were then taken to a paediatric bed. Of the four paediatric beds in the ED ward, I observed that my infant was the only paediatric patient in those beds with all other beds used by adult patients.

We spoke to a nurse and explained our story again. The nurse explained to us that it had been a very long day and it was very busy in the ED and they were glad they were nearing the end of their shift. I felt exhausted for them and they continued on to observe my infant. They were looking for a paediatric saturation probe to connect to check my infant's oxygen levels and explained to me that they very rarely found these probes in the ED as they were few and far between. They went looking for one and came back with an adult probe. Having had my infant's oxygen checked on numerous occasions, I explained to the nurse that the adult probe would simply not work and they would need to find a paediatric one, however the nurse told me they would try anyway. The nurse placed the probe on my infant’s ear and my infant kept moving away and pulling it off. The nurse then turned off the machine and explained that they had got what they needed. I asked them what my infant’s oxygen was and the nurse simply said they were good. I was shocked as most nurses usually question my infant’s oxygen being so low, however I just assumed this nurse had seen cardiac patients before and so let the matter be.

A doctor came in and saw us and explained my infant would need to have an ultrasound of their bowel and so we went to have this done; this was about 3 hours since arriving at ED. The sonographer also explained to me that it had been a long day and told me that they had never scanned a paediatric patient before but they would try anyway. I was feeling unsteady about this but we proceeded regardless. My infant was still in a lot of pain as they had been all night and cried in pain a lot during the scan while the sonographer pressed on their tender abdomen. Once finished, the sonographer told me that they would send the scan straight through and the ED would receive it within 5-10 minutes. This was now just over 3 hours since arriving when we returned to the ED.

While we had had the scan, the nurses had done a hand over and a new nurse came on shift. Unfortunately, a new adult was also being moved into the bed next to us (the paediatric bed again) and because they were under arrest, my nurse was busy with that patient for 2 hours before they came and introduced themselves to us. I was very disappointed that we had been left for so long while my infant continued to scream and cry in pain - and my infant’s oxygen would have been very low by this point I was sure (even though it hadn't been observed in hours). Our new nurse was very apologetic for the wait and I appreciated their empathy to our situation. They went to find a paediatric saturation probe to check my infant's oxygen and came back with one a few minutes later. They plugged it in and my infant’s oxygen read 86% which is normal for them. The nurse looked worried and explained that level is not good. I reiterated my infant’s condition to the nurse and told them that in fact it was an accurate and acceptable level. The nurse proceeded to explain that the previous nurse had recorded a saturation level of 100% on their shift and so they were concerned this had dropped so low. I was shocked to say the very least. My infant has never reached 100% in their life - in fact, they were born with just 40% O2 and wouldn't reach 100% until after the next surgery. It appeared that the previous nurse who hadn't used the correct equipment, had made an assumption and recorded an inaccurate level on my infant's health record that was completely false. My current nurse said they would bring this to the attention of the coordinator on duty in the ED but I never heard back anything about this matter.

Being now around 5 hours since arriving at the ED, I also asked our nurse if the ultrasound results were back and asked could someone come and tell us about them. The nurse went to check this and came back promptly to say that they were not back yet. I thought this was strange as the sonographer had said it would take 10 minutes and I expressed this although the nurse explained that it could take up to 3 hours. By this time, my infant and I were absolutely exhausted.

I asked the nurse if the paediatric team were coming to review my infant as suggested by the GP clinic in our letter, although they told me that there was no need for them to come. So I continued to wait for the ultrasound results.

9 hours since arriving at the ED and not only had my infant not been observed for hours, we also had no ultrasound results now, 6 hours after the scan had been done. I rang the bell to ask our nurse if they could check on why the ultrasound was not back yet. They explained that they were still busy in the ED and offered me a blanket. They did not check on the results and left us once again with no observations.

I fell asleep in a hard chair once I had got my infant to sleep in the bed. I was exhausted, we had now been in the ED for 11 hours with no answers, few observations done, no paediatric team seen us and the doctor had been to see us once. Our nurse came in and explained that the ultrasound results should be coming soon and that there had been a problem with them. I asked what the problem was and they explained that the sonographer had not pushed the button to send the scans through to ED but they are sending them now. To say I was upset is an understatement.

12 hours since arriving at the ED is when the doctor came in to see us again. They explained that there had been a technical glitch with the scans and that IT had looked at it. They did not apologise or offer any other explanation. The doctor explained that the scans looked clear, there was no intussusception of the bowel. They then said we were free to go home and asked if that was okay. I explained that was not okay because we had been sitting for 12 hours now, still with no answers, my infant was still in pain and in addition to being extremely, beyond-words exhausted, we were now being dismissed without any further examinations. The doctor explained to me that many people come to their ED with various things and sometimes they never find the answer to their symptoms and they are often sent home with no diagnosis.

So we left the hospital and in further investigations elsewhere, my infant was found to also be intolerant to soy, hence their ongoing pain.

My infant is not my first child as I also have a toddler, who also happens to have a congenital heart defect. Unfortunately, I have many more stories like this one with both my toddler and infant where I have felt let down by Bunbury Hospital and in particular the Emergency Department, a system that we should trust but which is in fact letting us down. It has gotten to the point that it is easier for us to travel directly to PMH to receive treatment by their amazing and very knowledgeable staff.

What I do want is answers to a few questions that really concern me.

Why is there a lack of paediatric equipment available at Bunbury Hospital and in particular the ED? This is really concerning as it causes false observations and risks our children's lives.

Why are adult patients using the paediatric beds in ED? It seems that paediatric patients are not taken priority and these beds are not reserved solely for the children in this city which is really disappointing.

Why do we not have trained paediatric sonographers? Or sonographers who only work with paediatric patients? This has not been the first time at the Bunbury Hospital that the sonographer for our children has explained they have never scanned children before. With a city as big as Bunbury, with as many paediatric patients as there are, why is there not a trained sonographer for situations like these?

Why is there a lack of training for complex medical conditions within the ED? And also a lack of paediatric knowledge? With appropriate training, this would ensure staff understand the patient's history, how to best approach their care, reduce risks and assumptions, and ensure open communication with long-term specialists in Perth. It would also ensure staff are trained in certain paediatric tests such as running a gas (during our last admission, it was explained to me that there are no nurses in ED who know how to run a paediatric gas).

Why is there no following up of tests once they are done? If our nurse checked on our ultrasound at when I first asked about the delay, we would have been home after only 6 hours in the ED, and not 12 hours after.

In saying this though, I have also received excellent care by many of the staff at the hospital - registrars, paediatricians and the paediatric ward. We have had admissions with staff who have gone above and beyond to ensure we are heard, to ensure our children are thoroughly observed and even to ensure our comfort while staying which is above and beyond what we expect. We do really appreciate those staff and feel grateful for their level of care with our children.