Pixie’s story as told by her mother…
On the 28th of August 2023 I was 38 weeks and 3 days pregnant and going in to have a scheduled c section with my 5th baby. When we arrived at the hospital, a midwife used a Doppler to check baby. She told us it sounded like baby’s heart was skipping a beat and they would set up a CTG for a bit just to check. I wasn’t concerned, I thought if there’s something not right baby is coming out today anyway. When the midwife returned she had said everything was fine. In theatre, our OB asked me if they could get baby checked over before handing her to me given there was a question over her heart beat that morning. I agreed. At 8.51am our 5th daughter was born. Pixie, weighing 2790g (6.15 lbs). They checked her over and passed her to me and I asked again if everything was fine with her heart and they said yes. At my request I was discharged the next day after Pixie was checked over again and again I was told she was perfectly healthy.
We went home to settle in with our new baby. About a week later I began noticing Pixie was breathing heavier, she was feeding, sleeping, content so I wasn’t concerned but knew to keep an eye on it and would mention it to our health nurse at our next visit. The following night she became unsettled, drawing her legs up and groaning and grunting in pain. Having been my 5th baby I suspected it was wind or constipation so I got something from the chemist to help and it seemed too. She was jaundice but I knew this was normal in babies. On the 9th of September I had taken a video of her breathing to show our health nurse and began to question if it was normal. She also had sticky eyes like conjunctivitis, but again I knew this could be normal for new babies. That night she was really unsettled. I had also noticed she always looked cold and I was layering her clothes and using blankets but put it down to her being tiny. The morning of the 10th of September my partner made a bottle for her before he went to work around 7.30am she had drank that and gone to sleep. When we woke up she was completely unsettled all day and would only nap on me and if she was upright. When my partner returned from work I’d said we’d had a rough day and I wasn’t sure what was wrong and then I realised she’d hardly fed all day since her 7.30am bottle and when I did try to feed her it was come out the sides of her mouth, she’d also had a vomit that day. He took over while I made dinner and I could hear her cry and groan. He said he didn’t know what else to try and I asked if I should take her to hospital and he immediately said yes.
We arrived in ED around 6.30pm on the 10th of September the day before she was 2 weeks old. I thought it would be something simple and they’d check her over and send us home. We got straight in to see a doctor and they told me they’d be admitting her because she wasn’t feeding. We got onto a ward within a couple of hours and I had told the nurse I thought she was hungry but she wouldn’t drink. The nurse left and came back and said they would put a feeding tube in and bring her back. While they took her to do that I set up for the night. When they returned they passed her to me and within minutes a paediatrician came in and said they were taking her to ICU. I carried her to ICU and it was the last time I held her for 8 days.
When we got to ICU they said they were putting a cannula in and asked me to wait outside, this was around 1am. I rang my partner and mum to keep them updated although I didn’t have much to tell as I had no idea what was going on. I remember being on the phone and looking at the clock and I said I have to go it’s been 45 minutes and no one has come to tell me anything yet. I walked back to her room and it was full of staff and blood everywhere. They said they had to call more people in to help and they couldn’t get a cannula in. I then stayed in the room. She ended up with a cannula in both her arms and her groin. They were then on the phone to a bigger hospital 6hrs away in Melbourne and had said her blood was acidic and they were going to fly her out and that she was too sick to stay here. I immediately rang my partner to come to the hospital. Melbourne was telling our hospital what tests to run and to give her a blood transfusion and they did an ECG, I wouldn’t know the results of this until arriving in Melbourne.
The PIPER team arrived to take her but it felt like hours before we left, I wouldn’t learn until later that it was because they didn’t know if she would make the flight or if they’d have to intubate her. My partner had asked me what I wanted him to do, at that point we still had no idea what was going on and I think I was in denial that it could be anything life threatening so I told him to stay with our other children and I’ll let him know what happens, Melbourne will figure it out and we could be home the following day but oh how wrong I was. Thankfully I was able to fly with her. We arrived in Melbourne around 2.30pm on the 11th of September. By this time I’d been awake over 24 hours. When the PIPER team did a hand over to the NICU team I’d heard someone mention heart failure. I immediately asked if she was in heart failure and they told me yes, your baby is very sick, this is very serious. My first and only question was, but she’s going to be ok? And they told me they couldn’t tell me, they didn’t know and couldn’t promise anything but they could promise they’d do everything they can and that Pixie was fighting very hard.
When a cardiologist came to see me he said they think she has a virus making her heart sick and said she had myocarditis. I’d heard of myocarditis before but didn’t know much about it. He had told me there’s nothing they can do for the myocarditis and only supports they could put in place to help her heart rest. She was showing signs of kidney and liver failure. I immediately rang my partner and family to organise our other children so he could come be with me. That night during a whole body ultrasound they found Pixie also had a duplex kidney. The next day my partner flew in and the cardiologist had asked us about family history in case they couldn’t find a reason why her heart was failing. After my partner arrived they’d got some tests back showing she had tested positive for rhinovirus and enterovirus and it was the enterovirus that had given her myocarditis. They explained to us that her heart function was 5% and they may need to intubate to give her heart a rest from breathing.
The following morning I awoke to a phone call to tell me that in the early hours the lower lobes of her lungs had collapsed and they had to intubate her. I had slept in my clothes and ran as fast as could to Pixie’s hospital room. She had a picc line in and was on so many medications I never knew a baby could even have at 2 weeks old. They then explained to us that they would be moving her to PICU and explained ECMO and said they may need to put her on ECMO and it is easier to do it in PICU because if it became an emergency it’d be unlikely she’d make it and told us they’d know within 24-48 hours if she’d need the ECMO. She’d received another blood transfusion and IVIG. As a mother all I wanted to know was if she was going to live and if she did what effect would this have on her life. The cardiologist explained that some babies will fully recover, some will need lifelong medications and some will need heart transplants and given the amount of supports they had to give her she had a very serious case of myocarditis.
Over the next few days her heart function had started to improve and things were looking up and she didn’t need the ECMO. They had decided to move her back to the NICU and begin lowering her heart medications. We thought we were over the worst of it but the worst was yet to come. Every morning I would ring to find out how she went overnight before heading to the hospital. On the morning of the 21st of September, I rang as normal and they’d said she’d done well and stayed stable and they’d continue lowering her medications throughout the day. We were so happy and could finally see light at the end of the tunnel. Doctors did their rounds and repeated the same as what the nurse that morning had told us. Just before lunch time her catheter came out. A nurse had a few attempts to put it back in but her body kept pushing it out. Eventually the nurse said they’d get a specialist to come do it. I noticed Pixie had become mottled across her whole body. I told her we’d go have lunch while they sorted that out. Not long after I received a phone call from the nurse saying they’d decided to start her back on some heart medications and not to be alarmed if there were a few doctors in with her when we returned. We immediately raced back to find out what was happening.
When we returned it was like we were living in a movie scene, medical staff filled the room. She had gone backwards and it had become an emergency. They were moving her back to PICU, all the staff had stickers on their shirts stating what their role was. A doctor rushed in and told us she was going to help Pixie and then explain to us what was going on. She yelled for someone to be on standby to CPR if they needed as they moved her, she yelled for someone to ring PICU and have surgeons on standby to put her on ECMO, someone unplugged her ventilator and was using a manual resuscitator and then they rushed her out. A nurse came to take us to the ward Pixie was in and told us we wouldn’t be able to go in the room yet. When we got to the ward we seen everything set up for ECMO and were put in a room to wait for a doctor to come see us. It felt like the longest time of our lives and all we could think was they were going to come in and tell us she didn’t make it. When a doctor finally came in she took a deep breath and we were expecting the worst.
She told us they didn’t know what had happened but would run further tests to see if she had another infection and that they had gotten her stable and back on all her heart medications and at the last second, before they were about to put her on ECMO, she responded to the adrenaline infusion and showed she didn’t need ECMO. We were completely shocked that for a second time our tiny 3 week old baby had escaped ECMO. Over the next few days it was decided that she’d stay in PICU until she was ready to go to a ward and they’d lower all her medications slowly.
On the 27th of September she was finally ready to go to a ward and was still on morphine and milrinone but would begin lowering that but also watching out for withdrawals. Nurses were blown away when she started feeding from a bottle and said babies that had just been through what she has don’t generally feed well for weeks, a few had also asked me about Pixie’s scar and when I questioned it because she never had one, they’d say they read what she’d been through and couldn’t believe she made it through all that without ECMO. She had a few hiccups in the ward getting her medication that she’d be coming home with right and getting her blood pressure right but on the 10th of October she was ready to be discharged.
She came home on propanolol every 8 hours. It was a tablet that we had to mix with water to give her. It was to slow her heart rate to get it to pump blood better and also lower her blood pressure, there was a point where her heart rate was in the 200s. She then had to have a follow up appointment 2 weeks later to make sure her heart was still returning to normal function. They’d also found a hole in her heart that they weren’t worried about and said would close on its own and was normal in many babies but they would keep an eye on aswell. In November we returned for another follow up appointment where they said she could come off the propanolol. They were completely blown away by her recovery.
She’s now 2 years old and we have, hopefully, one cardiologist check up left and they’ll discharge her completely. It was by far the toughest, most traumatic thing our family has ever been through and we’ll never forget it but we are so grateful for her medical team that saved her life. Pixie is our very own little miracle and looking at her every day reminds us how lucky we are that she’s still here. We had so many questions about how and why this had happened to our baby girl but the cardiologist told us it’s rare and Pixie was just unlucky that a virus went to her heart. When Pixie first got sick I googled so much to find outcomes in other babies and sadly there aren’t many good outcomes or much information about myocarditis in babies so now we tell her story and raise awareness so that if another parent has to go through this they might see Pixie’s story and know there is hope for a full recovery.
