Every day, 13 babies in the UK are diagnosed with a congenital heart defect. That’s over 4000 babies every year where the cause of the condition is mainly unknown.
We as a family were completely unaware of congenital heart disease until Calum was born in 2006. At one day old during Calum’s routine baby check, a doctor detected a ‘heart murmur’ or a different sound when he listened to his heart with a stethoscope. An ultrasound scan confirmed a heart defect and the words “we are failing to find some major components of Calum’s heart” will stick with us forever. As you can imagine these words turned our lives upside down and at that point we really didn’t know what the implications were or if Calum would even survive.
Calum was transferred to Bristol Children’s Hospital and was diagnosed with a complex heart condition called Truncus arteriosus where the main arteries that come out of the heart had not formed properly. I remember being given a booklet from the BHF on the heart condition and this gave us the first glimmer of hope that this condition was known about and they could maybe do something to help him. We were told that Calum would need major open heart surgery in the first few weeks of life and this had significant risks. This was hugely scary but we had no choice but to put our trust in Professor Massimo Caputo and the amazing cardiac team and hope that Calum had the strength to get through the surgery. Calum had his operation when he was 13 days old, I find it amazing to think that Massimo was operating on a heart the size of a walnut. Calum was in theatre for an incredibly long 6 hours, it was such a huge relief to see him in intensive care afterwards but also really tough to see our tiny baby with an open chest and attached to lots of tubes and machines.
Calum made a slow recovery from his surgery, spending 3 weeks in intensive care, but with a bit of time to recover and regain some weight Calum finally turned the corner and was able to be taken off the ventilator that was breathing for him. I remember this being a really emotional moment as finally we could think about our baby boy maybe coming home. We finally brought Calum home on the 17th March, 6 weeks after he was born. We felt incredibly grateful as before the BHF was founded, the majority of babies with a congenital heart condition died before their first birthday. Today, thanks to advances in treatment and care, around 8 out of 10 babies with congenital heart disease survive and will grow up to be adults.
When Calum had his surgery at 13 days old he had to have an artificial tube inserted to act as part of his pulmonary artery which takes blood from the heart to the lungs. Unfortunately this tube does not grow with Calum, so this has meant he has had a number of further operations to replace this tube. He has had surgery at the ages of 4, 6, 11 and most recently in February last year at the age of 13.Having to have so many big heart operations is hugely stressful and traumatic for the whole family. Thankfully we all have access to psychological support from the cardiac team which helps us all through some of the tougher times, and we as a family are incredibly close and supportive of each other.
Due to Calum’s heart surgeries, Calum has missed lots of school and is unable to participate in lots of activities that his friends do. Despite this, Calum makes the most of everyday and is incredibly positive. He loves supporting Bristol Bears Rugby and is a keen gamer!! He has faced so many challenges in his 14 years due to his heart condition but he is incredibly happy, positive and determined, we certainly could not be prouder of him.
Calum is incredibly proud of his ‘special heart’ and has enjoyed fund raising and raising awareness of congenital heart disease for the BHF. He has been part of big BHF campaigns including ‘Bag It, Beat It’ and ‘Wear It, Beat It’. He particularly enjoyed appearing on the Good Morning Britain sofa in 2015. He has also won BHF Heart Hero Awards in 2016 and 2018.
In 2017, ahead of Calum’s 4th open heart surgery he spoke to the BHF about documenting his journey to his heart operation. Calum wanted people to know what it is like to have a ‘special heart’ and have to go through heart surgery. This resulted in a series of small films being recorded on our phones and ipads and these are available to view on the BHF YouTube channel, they definitely show the reality of having to have major heart surgery.
Over the years Calum has always had the same heart surgeon, Massimo, and has built up a very special relationship with him. He has worked with him a number of times to promote BHF funded research that is being done at Bristol University. This work includes looking at growing heart tissue from stem cells which would then grow with the child, thus reducing the need for so many repeat operations. This is hugely exciting research and could benefit Calum and many other children in the future.
We already know Calum needs to have further surgery as he gets older so we are hugely grateful to the BHF for their support of so many research projects that could ultimately benefit Calum in the future.
Thank you to the Morris Family for allowing us to share their story.