“I’m sorry to tell you there is something wrong with your daughter’s heart.” Words no parent ever wants to hear, but words that Rhonda Cameron from Newtownards had to hear twice within just a few short years after her daughters Eve and Abigail were born with congenital heart disease.
Now, Rhonda is passionate about raising awareness around heart conditions which is why she is participating in local charity Northern Ireland Chest Heart & Stroke’s (NICHS) Red Dress Fun Run 2023, supported by MACE and Musgrave MarketPlace. This will be her second time taking on the five-kilometre run or walk event which aims to raise funds for the charity’s care and prevention services and research as well as awareness of heart disease as it takes place in February which is Heart Month.
Rhonda says; “When I was pregnant with Eve I never imagined anything could go wrong. Pregnancy and the new-born stage are always painted as such lovely times when the biggest thing you have to think about is how to decorate a nursery. You never think you will end up on a medical journey with your baby. You never think these sorts of things will happen to you, and especially not twice.”
Eve is now ten years old, but Rhonda remembers finding out she had a heart condition like it was yesterday. “The day after Eve was born she was having her new-born checks done and a concern was raised. It wasn’t until 5 weeks later however, when we were at Children’s Cardiac Services at the Royal Victoria Hospital that we were told there were problems with her heart. Hearing the words, “There is something wrong with your daughter’s heart”, was a total shock.”
Rhonda continues; “We were told Eve had a hole in her heart as well as pulmonary stenosis. Pulmonary stenosis is a narrowing of the valve between the right pumping chamber and the large blood vessel that carries blood to the lungs to pick up oxygen. This means the heart has to work harder to pump blood through the narrowed valve and over time, makes the muscle in the right ventricle thicken. She also had sub-aortic membrane growing around her heart which needed removed. It was just all so much to take in and we didn’t really understand everything at the time.”
“At first, we had appointments with Eve’s cardiac team every eight to twelve weeks, so they could keep a close eye on things but at two years old it was decided that Eve needed open-heart surgery. During her surgery the doctors actually found another hole in her heart which had never shown up on any scans.”
“Going through the open-heart surgery with Eve was so tough. You have no concept of what that’s going to be like and the aftermath of your child being in ICU. You cannot be prepared for seeing them so ill. Thankfully Eve recovered brilliantly and was walking about the ward four or five days later.”
Unfortunately, Rhonda’s family’s experience with heart illness was not over yet as her second daughter Abigail, now six, was also born with congenital heart disease. Rhonda explains; “Due to Eve’s conditions I was monitored closely throughout my pregnancy with Abigail. She was a very active baby however and was hard to scan. This meant the foetal echocardiogram, which is the ultrasound that shows the structure of an unborn baby’s heart and how well it's working, didn’t pick up the hole in her heart.”
“The hole in Abigail’s heart wasn’t detected until my husband and I took her to the GP for her vaccinations at eight weeks old. The doctor had finished doing the top to toe checks when she went very quiet. We were moved into another room which we thought was strange as you’re usually in and out as quickly as possible when you go to the GP’s. The doctor said she wanted to run a test and put a pulse oximeter on Abigail to get a reading of her blood oxygen levels. She then said she had detected a murmur. After everything we had gone through with Eve our hearts just sank. We were then given an urgent referral to Children’s Cardiac Services at the Royal Victoria Hospital.”
“Abigail was also diagnosed with a hole in her heart and a leaking tricuspid valve, but her conditions weren’t as severe as Eve’s. It was decided Abigail should be monitored to see how things went as she grew. Surgery hasn’t been necessary so far as is it looks like the hole is closing itself which is amazing.”
Thankfully both Eve and Abigail are now thriving. Rhonda says; “To look at the girls you would never know they have heart conditions. We are so lucky that they are doing really well. But that is the thing with heart illnesses, sometimes people can be so sick, but it might not be obvious from looking at them. People therefore don’t realise the seriousness of what they are going through.”
“You also don’t realise how many children are affected by heart illness until you are one of the families sitting in the hospital waiting room amongst everyone else. It’s an emotional rollercoaster and very hard.”
Rhonda is sharing her family’s story to raise awareness and help other people in a similar situation. Rhonda says; “Of course, when you’re told your child is ill you are devastated but we have had such positive outcomes for Eve and Abigail and hopefully hearing our story might help others. That is why I have signed up to Northern Ireland Chest Heart & Strokes Red Dress Fun Run, to help raise awareness. I also want to help raise funds for the charity’s research work. Investment in research into heart conditions and advancing treatment options has been essential to the girls’ having such successful outcomes.”
2022’s Red Dress Run saw over 500 participants turn Stormont into a sea of red as they walked, ran, skipped and wheeled 5k across the estate, raising a staggering £50,000. This year, the event takes place once again at Stormont Estate, however the virtual element introduced due to previous COVID-19 restrictions remains, allowing people who can’t make it to the main event to complete 5K during the month of February.
Tara Currie, NICHS Events & Marketing Manager is urging family members of every generation, age and ability to sign up saying, “Sadly, four people in Northern Ireland die every day from heart disease, and coronary heart disease is the biggest single cause of premature deaths of under 75s.”
“So please come join us on Sunday 26th February at Stormont Estate, or if you can’t make the live event, you can support us by doing 5k your way any day, or over days, in February. Dress red, wear your heart on your sleeve to remember a loved one and together we can help rebuild thousands of lives and make a lasting change towards heart health in Northern Ireland. Everyone is welcome to join in the fun - even the family pooch!”
The charity will once again partner with MACE for 2023 and are delighted to welcome sister company Musgrave MarketPlace which will also support the event. Diane Anthony from Musgrave says, “Mace and Musgrave MarketPlace are both backing NICHS’s call for people to dress in red and wear their heart on their sleeve at this year’s event, which is set to be fantastic. Whether you’re taking part in memory of someone you have lost to heart disease, celebrating someone who is living with a heart condition, or to prevent heart disease happening to someone in the future – sign up and join us to support this worthy cause!”
If you have been inspired to step up to the challenge by Rhonda’s story you can sign up to the Red Dress Fun Run at www.nichs.org.uk/RedDressFunRun
Primary school pupils are also invited to join in by hosting their own fun run anytime this February. Each school that takes part will receive a certificate of thanks to show how much they raised and there is an opportunity to win some fantastic prizes. You can find out more about getting your primary school involved at www.nichs.org.uk/PSRedDressFunRun