Our story is a little bit different. Pixie was born at 38w3d via a scheduled c section. The morning of my c section they said her heart sounded like it was skipping a beat, but it was nothing to worry about and they checked her once born and said everything was fine. We were discharged the next day and came home to start enjoying life as a family of 8. When Pixie was a week old, I had noticed she was breathing heavy but everything else was normal, she was still feeding and still a content baby, so we decided we’d talk to the health nurse at her 2-week apt. Only we never made it to that apt. 2 days before she was 2 weeks, she had become unsettled, but we just put it down to being a baby or being constipated. The next day she was worse and had begun refusing feeds and groaning in pain. By that night we decided she needed to be taken to ED to be checked. We were seen straight away and told she was being admitted but no one knew what was wrong at this point. We were sent to a ward where they decided to put a feeding tube in. A paediatrician then came in and said she was being sent to ICU, when we got there, they attempted to put a cannula in and asked me to wait outside. When 45minutes had gone by me returned to a room full of staff trying to help our baby. I was told her blood was acidic and then found out they were on the phone to the PIPER team at RCH and she would be flown to Melbourne RCH NICU. Which is a 6hr drive for us. I flew with her and told my partner to stay with our other 5 children until I could find out more. When we arrived at RCH, we then found out that Pixie was actually in heart failure and her heart function was only 3%. They suspected she had a virus giving her myocarditis but told us she is fighting really hard. My partner flew in the next day to be with me. I had asked the drs if she was going to be ok and they said they didn’t know but they were doing everything they could. She had 2 blood transfusions and IVIG. They explained they may have to intubate her and that’s exactly what happened her 2nd night in NICU. The lower lobes of her lungs collapsed. They’d found she had 2 viruses, enterovirus and rhinovirus which went to her heart and gave her myocarditis. They also found she had a duplex kidney and a hole in her heart. After intubation they explained she may need ECMO which is a heart and lung life support machine. So, they wanted to move her to PICU where that was readily available. She spent nearly a week there when they said things were looking up and she wouldn’t need the ECMO and that they would send her back to NICU and start weaning medications. On her 2nd day back in NICU, we were so excited to go up and see her and start weaning the medications hoping it’s a step closer to going home. They said she was doing well; a cardiologist had come in and said she was doing well but her catheter had fallen out and her whole body became mottled which we thought no big deal.

They said they’d get someone to come in and try put it back in with an ultrasound after a few failed attempts, so we decided to go to lunch while they did that. Nothing could have prepared us for what we walked back into. A nurse rang us and said don’t be alarmed when you come back, there’s just a few drs here and they’re going to start her heart medication again but she’s ok. By the time we had walked back to the NICU, her room was full of staff, and they said she was being moved back to PICU. A dr came in and said she was going to help Pixie and then tell us what was going on. Then I heard her ask for someone to do CPR on the way if they needed it and for someone to ring PICU and have surgeons on standby for ECMO. They whisked her away and we had to wait in a room for someone to come tell us what was going on. We thought they were definitely coming back to tell us she didn’t make it, we thought there was no way a tiny baby would be able to survive this. Then after what felt like hours a dr came in and told us they had gotten her stable and at the last second, she showed she didn’t need ECMO, but that night would be a wait and see what happens night. They were unsure why she went backwards and were checking for a secondary infection, or it could have been the trauma of trying to redo the catheter and her heart just wasn’t ready to come off medication yet. So, this time everything would be done a lot slower. From then each day slowly got better and better. She spent a total of 4 weeks in RCH and were discharged home with heart medication to wait and see if her heart would fully recover or what kind life, she would be able to have. At 3 months old we had a cardiologist check-up where they found her heart was back to normal function. No one could believe how this tiny baby with 3% heart function made a full recovery without any surgery. She’s now 6 months old and off all medications but still seeing a cardiologist for the first year of her life to make sure nothing changes. This experience has changed our lives in so many ways, but we’ll never forget just how lucky we are and what a true little fighter our Pixie girl is or how grateful we are to the RCH NICU and PICU teams for saving our baby.