HeartKids is encouraging Australians to show their heart in February to support families living with congenital heart disease (CHD). Eight Australian babies are born each day with congenital heart disease, a lifelong condition that affects almost 6,000 new parents every year. It is one of the leading causes of death and hospitalisation in infants and sadly, takes four young lives each week. There is no known cure and those that survive often require a lifetime of specialised medical care.
For more information or to donate www.heartkids.org.au/showyourheart.
Question: Can you tell us about your CHD journey?
Elle Pendrick: My CHD journey is hard to sum up in a paragraph. When I get a medical form to complete, I usually abbreviate everything and end up with something like: 5 x open heart surgeries, 12 x cardiac catheters, 1 x cardiac ablations, 1 x pericarditis, 1 x septicaemia, 7 x pneumonia, 1 x glandular fever, and blood clots in my heart. That usually gets the attention of the GP, teacher, or workplace. It's also earnt me a seat at the table of the local county pub with the oldies as a proud member of 'zipper club'.
Question: When were you first diagnosed with CHD?
Elle Pendrick: The story of my diagnosis is legendary in my family. I was born in 1983 in Wagga Wagga Base Hospital (NSW). Within hours the great country doctors knew something was very wrong with my heart. This resulted in my first (of two) air ambulance rides to Sydney during my life. At the ripe old age of 3 days, I was taken to the airport where staff told my parents they couldn't come with their newborn baby. My mum wouldn't have a bar of it and got on the plane anyway. When the plane entered Sydney airspace, they couldn't land due to a cracking thunderstorm. After an hour of circling the runway, we finally landed and entered the ambulance hangar where staff were waiting to whisk me off to the hospital. They didn't count on needing a wheelchair for my mum who was ready to pass out from a birthing infection. My dad and 3 year old sister made the 8+ hour drive to Sydney in the storm not knowing the fate of their new child/sister. At Camperdown Children's Hospital in Sydney I was finally diagnosed with pulmonary atresia, an intact septum, and a leaky mitral valve and had my first open heart surgery.
Question: How did CHD affect you, during childhood?
Elle Pendrick: Oh, let me count the ways CHD affected my childhood… physically, mentally, academically, socially… the list goes on. At the time I didn't know any different so it didn't bother me and I just got on with the only life I knew. Now when I look back, I realise how different I was from other kids. As an example, I remember standing in the primary school car park at the end of Year 1 with my Mum. She was reading my school report card and burst out laughing when she read that I had missed almost half the school days that year. I remember standing there thinking 'what's so funny?', but I now get that she had to laugh so she didn't cry. Miraculously, with all the days of school I missed I never had to repeat a year.
Question: How does CHD affect you now, on a daily basis?
Elle Pendrick: As much as I like to say my CHD doesn't affect me on a daily basis, I will begrudgingly admit it does. Over 3 decades, the best way I can describe how it affects me is through a money analogy (everyone understands money). Essentially, I have $100 of energy per day, some days going up a flight of stairs will cost me $5, some days it will cost me $50, so I judge whether to use the stairs or lift based on that. If I overdo it by spending $150 per day of energy, I will have to pay back the money I over spent at some stage. This usually involves me being exhausted (or picking up a bug) for anywhere from a day to a few weeks. In addition to consciously managing my energy levels across every aspect of my life, there are also psychological impacts that I have always had but never really acknowledged until the last few years. For example, I don't wear lanyards because they uncomfortably rub on my chest tube scars, I have flashbacks every now and then from hospital procedures, and don't own many clothes that show my scars (e.g. v-neck tops). I have discussed these with a psychologist and found it very helpful.
On reflection, it's not surprising that people living with a chronic heart condition (CHD), who have often endured multiple traumatic medical procedures that are only temporary fixes (not cures) have higher mental health concerns. People with CHD as well as their families have a poorer quality of life than the general population and suffer higher rates of mental health problems including depression, anxiety and post-traumatic stress disorder (PTSD). Almost 1 in 3 people living with CHD experience anxiety and depression. Additionally, almost 80% of parents of children with CHD have profound levels of psychological distress including anxiety, depression and post-traumatic stress disorder. The new CHD National Action Plan identified this as a key issue and proposes the development of a world-first Mental Health and Neurodevelopmental Standards as part of the National Standards of Care among other initiatives. If you or your family need any help please call the Heartkids Helpline – 1800 432 785.
Question: Do you think CHD affects girls and women differently than men?
Elle Pendrick: Absolutely! CHD can have an incredible impact on girls and women! With my type of complex CHD there is a much higher chance of maternal mortality. I had to have the difficult discussion about this with my gorgeous husband in our early stages of dating and we decided together not to take the risk and will never have our own children. While we are ok with our decision, I find as I'm getting older I get more questions about this and sometimes find them a bit confronting. When I was in Southeast Asia recently several local women found it astounding my husband still married me when I couldn't give him children. I know ladies, I'm a very lucky lady indeed!
In addition to the baby issue, surgical interventions to temporarily mend our broken hearts, like open heart surgery, can also impact women's bodies differently than men. After my last open heart surgery my boobs went all over the place (,)(') and took months to get back to their natural position (.)(.) which makes bra shopping hilarious. I also ended up anaemic 9 months after the surgery because my period went haywire. I still do not understand how heart surgery and periods are related, but trust me they are. Sometimes I felt quite isolated going through these experiences by myself. I can't put into words what it has meant to meet other women with CHD through HeartKids. I'm all teary now trying to explain it, but the word that comes through the strongest is relief. I'm not alone, and I don't know how to thank HeartKids enough for giving me this profound feeling of belonging and understanding.
Question: Can you talk us through how important exercise is to your health?
Elle Pendrick: Exercise and I have had a long term love-hate relationship my whole life. In primary school I did little athletics, physical culture and hockey – I was terrible at all of them. In high school I did everything I could to get out of exercise. In my 20s I didn't do any type of structured exercise, but I'm convinced that dancing the night away at a night club counted. Finally, after my 5th open heart surgery in 2016 I went to hospital out-patient rehabilitation and it changed my views and experience of exercise entirely! I now do exercise my way, not the way sports magazines or celebrities say, because let's face it most of them have never heard of CHD. Having an exercise buddy in my husband and new technologies have also made exercise more doable. With my electric bike, I can let my competitive side out and race my husband around the lake in Canberra! I've written some tips about CHD and exercise you can check out here.
Question: What's the main message you'd like to spread for CHD Awareness Month?
Elle Pendrick: My main message is that CHD exists and HeartKids need more support!
In Australia there are currently about 65,000-90,000 people with CHD, with around 1 in 100 babies born with CHD each year and the adult CHD population increases annually by around 5%. With these figures, I'm constantly surprised how many times I mention CHD and get the response 'C H … what?'. Furthermore, many people haven't heard of the amazing organisation HeartKids. I can't emphasise how lucky we are to have HeartKids in Australia. They are the only national charity dedicated to supporting kids and families affected by CHD, and have really lived up to their mission of Advocacy, Information, Research and Support for all of us. They need more funding to keep up the excellent work that I so many of us in the CHD community have benefited from personally through visits from support staff in hospital, or more broadly through the National Action Plan.
Question: What advice do you have for parents of children recently diagnosed with CHD?
Elle Pendrick: My main advice to new parents is that you are not alone. Over the past few decades HeartKids has done an incredible job of building a unique and welcoming community for you to join when you feel ready. My other advice is that as a heart kid parent you will become one of the bravest people, although it may not feel like it at the time. As an adult now, I understand how brave my parents and other heart kid parents are. My parents were in their late 20s when they had a baby with CHD, something they had never heard of. At a time of no mobile phones, no google, and no statistics they were charged with keeping me alive. They were brave when they took me home after I had surgery at 3 days old. They were brave when the doctors gave them a choice of what type of surgery I should have - each with their own high risks and the inability to do their own research. They were brave when managing a household of 3 kids and having to drive the 8h+ from Wagga to Sydney for my appointments and surgery, missing days off work, and paying all the add on costs of having a child with CHD. Now I'm older and my friends have children I have realised just how brave my parents were and still are today. Being a part of Heartkids, I've heard so many similar stories and I'm in awe of parents of heart kids, and incredibly grateful that Heartkids can support them.
Question: What's next, for you?
Elle Pendrick: Medically, the next thing for me will likely be a pulmonary valve replacement. I had my current pigs pulmonary valve implanted in 2004. At the time the doctors said it would last about 10 years, but 16 years later it seems to still be hanging in there ok. Until I start getting symptoms, like shortness of breath, or something comes up in my annual check-up I'll just keep living my life to the fullest.
As a new member of the HeartKids Board of Directors I'm thrilled with what's next! We will be implementing the National Action Plan to reduce the impact of CHD in Australia and achieve the goal that people with CHD live longer, healthier and more productive lives through effective management of CHD across the life course. It's a very ambitious goal, but with the dedicated HeartKids staff and dedicated community I'm sure we can achieve it. If you'd like to know more about the Plan, you can check out my summary here.
Interview by Brooke Hunter