A firebird

Rachel is Phoenix's mother. They live in Australia. One year ago, Phoenix had sudden cardiac arrest when he left the water. From birth he had LQTS confirmed, type one. He was taking medicine.  Despite this, the unfortunate event could not be avoided. Phoenix is ​​now seven years old and implanted with ICD. To this day, the whole family lives on what happened last year.

What's your name?
- Rachel March, I am 30 years old.

Where are you from?
- Newcastle, Australia

Who in your family suffers from LQTS?
- Myself! We haven’t been able to trace it back to which side of the family it came from.. yet. My son (7) and one of my twins (18m) inherited it from me. My sons is classed as severe and my daughter, well, we aren’t so sure yet but she’s under close watch from the children’s hospital and will be monitored as she grows.

Has anyone had LQTS symptoms?
- I have been a-symptomatic my whole life but my son has had several fainting episodes leading up tis first cardiac arrest in January 2019.

What type of LQTS are you?
- We all have type one which is triggered by running, swimming and any strenuous exercise.

What is your son's name and how old is he?
- Phoenix. He is named after the band, and also after Fawkes, the Phoenix in Harry Potter. A firebird who dies and rises from the ashes. A  fitting name considering what he’s been through. He will be 8 come this July (2020)

Do you remember the day he stopped?  How did this happen?
- We were at the beach, he had just jumped in the water for a quick swim and collapsed as he was walking out of the water. I pulled him out instantaneously, he looked dead. His lips were blue, he didn’t have a pulse and his jaw was locked shut. There was a nurse close by who saw what happened and rushed over to start CPR. there was also a geneticist there who specialises in paediatric heart syndromes like LTQS, she directed the paramedics and knew exactly what to do and how to handle the arrest. There was an ambulance five minutes away that just so happened to be in the area.. he was fully medicated at the time. He was unconscious for what felt like forever but all up in was 90 seconds (I think) he did not need to be shocked. He was taken to our local hospital, I had our five month old twins with us so we had to follow the ambulance to the hospital, I can’t actually remember driving there, it was so stressful and such a blur. We were then transferred to our local children’s hospital in Sydney which was 2 hours away from home. We lived in this hospital for about five weeks, he had a surgery called a sympathectomy where the left sympathetic nerve was severed, decreasing the amount of adrenaline delivered to his heart in times of exertion (running around at school for example) he also had a pacemaker and ICD (implantable cardiac defibrillator) placed and a third surgery where they put him into cardiac arrest to set the ICD. It was the most stressful time of my life and I am still battling PTSD from it. Life really can change in a split second.

When was your son diagnosed with LQTS?  Did he take betablockers?
- He was diagnosed at birth and medicated immediately with beta blockers (metoprolol) but since his arrest has since switched to nadolol.

What treatment did your son receive after sudden cardiac arrest?
- Immediate oxygen treatment and constant heart monitoring. The surgeries mentioned above (sympathectomy, Pacemaker and ICD placement, and SCA induced for setting. Plus, loads of love and magic from the children’s hospital and our family. The children’s hospital is truly a wonderful place. One of our twins (Nyah) was also diagnosed while we were living down there as well. We needed to come home with an AED (external defibrillator) for her. We had friends start a go fund me to raise money so we could buy one, they are so expensive ($3599) Our go fund me went over budget by $5000 which we donated to the ward we lived on during that time. This money was used to buy PCA machines so that two kid’s could go home and receive medicine from home rather than sit up in the hospital. It gave them time with their son before they had to pack up their whole life and move to Victoria to wait for a heart transplant. I believe he didn’t get to go home because he deteriorated and has since gotten his heart transplant, but another little girl did. This bought so much joy to us, we had felt so helpless.  The nurses and doctors on that ward are truly amazing. We learned CPR, we did trauma therapy and had social workers with us every day. We had so much support and I don’t think I’ll ever be able to put our gratitude into words.

How does your son feel?
- If you asked him, he would say good and seem unphased but he truly is still adjusting. He is still very much affected by what happened and is learning to love his ICD. He hates that he can’t do the things he used to do. His dad is a surfer and surfed professionally growing up, Phoenix has always wanted to follow in his footsteps. He is not allowed to swim in open ocean so this has been pretty hard for him go through. Santa got him a skateboard for Christmas though so he’s got a new hobby :)

How are you feeling?
- I have good days and bad days. It’s almost been a year since he went into cardiac arrest but it feels like only a minute has passed. I’m trying to be kind to myself and utilising therapy and help. I do a specific type of trauma therapy called EDMR for PTSD and it has helped immensely. I don’t think I’ll ever be able to get the image of holding my dead little son in my arms, and then watching him get resuscitated, out of my head. Nothing can prepare you for it, and it’s very different to what you see in the movies.. real CPR is brutal. It’s been a horrible year for us, but it’s also the year our son was bought back to life so we all feel very VERY lucky.

How to learn to live with LQTS?
- Honestly it’s never affected me until now. Like I said, I’ve been asymptomatic my entire life, what happened with my son recently was my parents worst nightmare with me growing up. I never expected any of this to happen... when he went into cardiac arrest it didn’t even register with me that it was heart related.. I thought he had swallowed water, or had a seizure.. It has shocked our family to its core, but we have a lot of support and lots of people who have carried us through. Sounds weird but so much positive has come from it too. I have such a beautiful community of heart mothers now that I can relate to on so many levels, I never had that kind of support before. It helps to have people who just get it, these conditions are so rare and it can be so easy to feel isolated. I’ve also decided to study nursing and midwifery in 2021. The nurses were the first people we saw when we got to the hospital and they helped us so much. I have such a high level of respect for nurses and I truly hope that I can be that person for a family one day. We met a beautiful family while we were living in hospital who’s daughter was diagnosed with a terminal illness and passed away just recently at ten months old. We helped raise 22 thousand dollars to help them buy medical equipment so they could take her home to be comfortable. Her mother is one of the strongest people I know, even if she doesn’t feel it. I have so much love and respect for her and we will be friends for life.

What are you afraid of the most?
- Honestly, cardiac arrest. Phoenix is safe with his ICD but it still scares me so much. Especially with my daughter, Nyah. She is too young for an ICD implant but seems to have a mild version of LQTS compared to my son. Losing my kids scares me but also, just because I’ve been asymptomatic my whole life doesn’t mean it’s not going to happen to me, the thought of leaving my children behind absolutely terrifies me. It has taught me to live life to the absolute fullest and I am very grateful for that.