06/04/2021
‘His arms were ‘flapping’ in unison, slowly but consistently, his saturation levels were dropping – Jude was having a seizure’
Imagine one minute having a ‘healthy baby’ and the next being told your baby is in heart failure and not knowing whether or not he is going to survive. For us, we didn’t have to imagine because this was our reality.
It felt as though I was having a nightmare and I was watching these events unfold through the eyes of a third person. I kept trying to wake myself up, but no matter how hard I tried - I couldn’t escape. I had absolutely no control over my body, I was shaking uncontrollably from head to toe and I felt like I was going to vomit, my mind had a million different thoughts racing through it and I couldn't think straight, let alone put a sentence together.
We stood in the hallway and tried to prepare ourselves for the phone calls we were about to make. I wondered how I was going to explain to my mum that her grandson was critically ill and that we were unsure whether or not he was going to make it - how do you even put that into words? I could see Sam on the phone to his mum, he was trying to tell her what had happened but he was struggling to put the words together, I could hear in his voice that he was having trouble catching his breath - he could hardly breathe.
Jude was transferred to the Neonatal Intensive Care Unit (NICU) where he was started on a general course of antibiotics to treat the unknown infection. A breathing tube was inserted into his airway (intubated), and he was placed on a ventilator machine – Jude was no longer breathing on his own. Jude was deteriorating quickly and seeing a machine breathing for him was a shock, I couldn’t help but wonder ‘how the f*!k did we get here?’
We were in NICU for what seemed like eternity when MedSTAR arrived to transfer Jude to the Women’s and Children’s Hospital for further care. It took them over an hour to transfer him into their humidicrib as they had to be very careful due to the large amounts of wires Jude was attached to and they needed to keep him stable during the transfer, which proved to be a very delicate operation.
I stared blankly out of the window of the moving ambulance, tears streaming down my face. It was like I had turned a tap on and was unable to turn it off again, the tears just kept flowing down my cheeks; I could taste the saltiness of them on my tongue. The drive seemed endless, and I kept drifting to memories of happier times when we were home and Jude was ‘healthy’, it was so hard to comprehend how quickly things had changed, they can change in a heartbeat.
Walking into the Paediatric Intensive Care Unit (PICU) was overwhelming, there was a team of medical staff waiting for Jude as soon as we arrived and it was all hands on deck as they set him up and connected him to all the monitors and machines. One of the first things they did was insert a central line (PICC line) into a vein in Jude’s ankle so they had access to administer IV and other medications if needed. Jude had a COVID swab (which returned a negative result) and he had various bloods taken to determine what kind of infection he had.
Later that night, a sonographer performed an ultrasound on Jude's heart, we watched her intensely as she moved the probe around Jude's chest, taking snapshots on her screen as she went. Soon after, a cardiologist came and spoke with us, explaining that the ultrasound had confirmed that Jude had Congenital Heart Disease (CHD) and that he had 2 holes in his heart called an Atrial Septal Defect (ASD) and Ventricular Septal Defect (VSD). The cardiologist explained that due to Jude being so unwell, it seemed likely that the illness had caused excessive stress on Jude's heart, intensifying his heart condition and causing heart failure. It was briefly discussed that it was a very high possibility that Jude would need open heart surgery in the future, however as crazy as it sounded it was made clear that Jude's CHD diagnosis was not our immediate concern, we needed him to pull through this infection first.
Only one of us was able to stay by Jude’s bedside overnight, so Sam headed home for the night - exhausted and emotionally spent, hoping to get some rest ready to face it all again the next day. There was a recliner chair in Jude’s ICU bay, which I curled up on and sat as close to Jude’s bedside as possible. There I laid, curled up in the foetal position and clutching onto Jude’s blanket, wishing I could hold him and make this all go away. Tears streamed silently down my cheek like a trickling river, I laid there in silence and watched on helplessly as our precious boy laid unresponsive, supported by machines. Despite the hustle and bustle of everything that was going on around me, I managed to doze off to sleep momentarily.
I woke abruptly to the chorus of Jude’s alarms sounding and a swarm of medical staff surrounding him, I could see Jude through a small gap amongst the crowd. His arms were ‘flapping’ in unison, slowly but consistently, his saturation levels were dropping – Jude was having a seizure. One after the other, minutes apart - they just kept coming.
I called Sam and through my tears, I told him that Jude was having seizures and that they were having trouble controlling them, he came back to the hospital straight away. Together, Sam and I sat by Jude's bedside, clutching each other's hands and we watched on helplessly as the Doctors and Nurses tried tirelessly to control his seizures.