Lucy's London Marathon for British Heart Foundation

London Marathon 2023 · 23 April 2023 ·
In 2017 when Ralph was just 16 months old, he was diagnosed with a heart condition that meant that he was having lots of abnormal heart beats. He was in danger of going into a continuous, fast, abnormal rhythm, which can be life threatening.
It was a very worrying and exhausting time (I was 5 months pregnant with Clara too). Ralph was immediately admitted to the high dependency unit at St Peters Hospital near where we lived in Surrey, and then referred to the leading electrophysiologist consultant at the Royal Brompton Hospital in London.
After multiple ECGs, 24 hours ECGs, echocardiograms (ultrasound of the heart) and blood tests, Ralph was diagnosed as having 'frequent ventricular ectopics'.
Ventricular ectopics are a type of arrhythmia or abnormal heart rhythm. They are caused by the electric signals in the heart starting in a different place and travelling a different way through the heart. Lots of people experience these occasionally (palpitations) and do not have any problems. But with Ralph, 30-40% of his total daily heart beats were abnormal. And scarier still, he was having 'runs' of abnormal beats which is a big risk factor for serious consequences.
He was started on beta-blockers and flecinide which we hoped would act as anti-arrhythmics, or at least reduce the risk of serious ventricular tachycardia. This involved two different liquid medications given every 8 hours, which meant waking him at 10pm each evening and getting him to suck yucky medicine out of a massive syringe. And then eventually going to nursery and school with a syringe of medicine in his bag each day. He never once complained.
He's endured countless 24 hour ECGs, having to carry around and sleep with a little bag with the device and leads attached via pads which irritated his skin for weeks afterwards. He didn't complain (much)!
We tried to make the hospital visits and stays as fun as possible and whilst he didn't like the cold gel on his chest for echos, he lay by my side and stayed still. We tried to visit the London museums after each routine visit, and the dinosaur skeletons were a good incentive for Ralph to comply!
The consultant told us initially that the ectopics may just resolve spontaneously and most likely by the age of 2 or 3; but that he should remain on medication and be closely monitored as his ectopic burden was so high. We were regulars at the Royal Brompton, every 3-4 months having echos and 24 hour ECGs. Once it was clear he was relatively stable and asymptomatic his tests were repeated every 5-6 months.
His second birthday came and went, so did his third, fourth, fifth and sixth. The consultants were talking to us about cardiac MRI mapping in preparation for cardiac surgery to laser the area of heart cells which were firing off these abnormal beats, but we just needed him to grow a bit more, as ideally he would need to weigh over 30kg. We were talking about exercise tolerance tests and there were worries about him being able to exercise normally as he was getting older and into various sports.
And then, just after his sixth birthday at his regular hospital visit to the Brompton (the first one of which I had not pre-called to find out his 24 hour ECG results), the consultant, in an excited tone, told us that Ralphs ectopic burden had gone from ~34% previously to 0.03%!!!!!! That's normal! His arrhythmia had disappeared. Spontaneously resolved. Normal sinus rhythm. Really? Really!
Over then next 3 months we gradually weaned him off his medications. Doing 24 hour ECGs after each dose change. Still normal. No medications at all and normal sinus rhythm!
Ralph is seven and a half now (the half is important) and his heart is beating in a normal way! He's no longer on any medication. He plays rugby, cycles, swims and dances. He's just completed his 10th Parkrun 5km, running on his own and has a PB of 30minutes, 38 seconds! He's still under the care of the Royal Brompton and probably will be for a few years yet, but he's been downgraded to one of their boring patients! I am extremely proud of how he dealt with everything at such a young age. He's just ace.
We are so grateful to all of the medical professionals that have helped him along the way. The GP who picked it up, the doctors, nurses and play specialists in A and E and on the wards of the various hospitals we've attended. The consultants, registrars, nurse specialists and echocardiographers. And not forgetting the consultants secretary who probably knows me just by my voice!
Advances in their work could not be possible without funding from charities like the British Heart Foundation, who fund around £100million of research each year into heart and circulatory disease.
And this research doesn't only help humans. I see canine and feline cardiac patients daily in my job as a veterinary cardiologist. I regularly perform the same tests that Ralph had; and humans and pets can often suffer similar disease processes. The veterinary and medical communities across the world share research data and advances made in certain fields can be passed along and utilised in other species. So any breakthrough cardiac research in the human field will inevitably help my furry patients along the way too.
So, on my 40th birthday next year (April 23rd) I will be running my first marathon in London! I've generally always been a runner but never more than 10 miles, and not regularly more than 10k! I'm hoping it will be an epic way to celebrate my birthday but I could be totally mistaken and finish the race more like 10 years older!
Ralph has been one of the lucky ones. Things could have been far far worse, and are for so many people. I'm grateful everyday that he is OK and send my love to anyone going through anything similar.
I hope after reading our story that you are able to donate what you can and help me support this fantastic cause.
Thank you, Love Lucy x
More on ventricular ectopics:
The heart has an electrical system that makes it pump. The normal electrical impulse starts in a specialised area of heart tissue in the right atrium called the sino-atrial (SA) node. It then passes from the right atrium through to the ventricles via the atrio-ventricular (AV) node.
As the impulse passes through the atrium it contracts forcing it to pump blood into the ventricle. It has the same effect when it passes through the ventricle. This electrical impulse travels through the heart each time it beats. It is something that happens naturally – you can’t feel it.
With ventricular ectopics, the electrical impulse starts from the ventricles before an electrical impulse can be made by the atrium and causes the heart to beat in a different way for that beat before resuming a regular rhythm.
The normal heart beat causes the ventricles (pumping chambers) to squeeze or contract at the same time (in synchrony). When you have an ectopic beat, the heart beat starts on one side of the muscle of the ventricles so one side contracts and pumps blood before the other. This is very unlikely to cause any harm if this is happening occasionally. However, if this becomes more frequent it can affect how your heart works.
What are the symptoms of ventricular ectopics?
Ventricular ectopics can be diagnosed by accident, if a person has an electrocardiogram (ECG) as part of a general check-up for instance.
If symptoms are present, they can include dizziness, palpitations, tiredness, feeling your heart miss a beat, fainting (syncope) or almost fainting (pre-syncope). If you are having episodes of fainting or collapse you need to let your doctor know.
If you are experiencing symptoms in the red flags box you should seek immediate medical attention.
Red flags
Changes in behaviour, lethargy, irritation
Dizziness or feeling faint (pre-syncope)
Collapse (syncope)
Changes in circulation: colour change such as dusky or pale skin,
clamminess or cool hands and feet
Breathlessness or breathing difficulties
In younger children and babies who are unable to say what they are
feeling they may have symptoms such as reduced feeding, or breathlessness.
You may notice symptoms are sometimes worse with lack of sleep and stress. Most people are not aware they are having ventricular ectopics so you may never experience any symptoms.
How are ventricular ectopics diagnosed?
A variety of tests will be performed to check how your hearts electrical system is working as well as cardiac function. Our routine screening includes:
An ECG records the electrical signal as it is conducted throughout the heart. It is a simple test performed by placing sticky electrodes on the child’s chest, legs and wrists. An ECG is entirely safe, takes a few minutes and causes no pain, although the child may be anxious about the stickers and connecting wires.
An Echo is an ultrasound scan of the heart. A picture of the heart is produced from which an accurate assessment of the size and function of the heart can be made. The scan takes from 30 to 40 minutes. As before this test is not painful, but children sometimes find the jelly on the probe a bit uncomfortable. Children can watch their favourite videos during the scan.
An exercise test is a specially modified test that assesses the rhythm and function of the heart at a faster rate, while the child is on an exercise bicycle or a treadmill. Blood pressure and breathing are also monitored during the test. This test is usually only performed on children over the age of eight years due to their size.
Exercise testing also provides us with an objective measurement of improvement, stability or worsening of heart function over time. The test takes approximately 45 minutes and allows symptoms not obvious at rest to become apparent when the heart is
working harder. We recommend children to wear loose comfortable clothing for the test.
An MRI scan uses a magnetic field rather than x-rays to take pictures of your child’s body. The MRI scanner is a hollow machine with a tube running horizontally through its middle. Your child will lie on a bed that slides into the tube. An MRI scan usually lasts between 20 minutes and an hour.
A 24-hour ECG recording (or Holter) uses a small box similar in size to a mobile phone, from which three leads are attached by sticky pads to your child’s chest. This is an ECG monitor that continuously records the heartbeat over 24 to 48 hours. Children wear the monitor under their clothes and can continue with their normal daily life including sport and exercise. You will be asked to document your activities during the 24 to 48 hour period to match with the recording
when the box is analysed. When the test is finished, you will be required to return the monitor so that the results can be analysed.
Blood tests are taken to look for electrolyte changes and infection markers.
How are ventricular ectopics treated?
Medication, usually a beta blocker or a calcium channel blocker, help to control the area sending out the extra heart beats and improve symptoms. Sometimes when you start these medication you may feel dizzy and tired but this should settle over time.
A procedure called an electrophysiology study and ablation may be suggested. The doctor will use either radio frequency ablation (heating therapy) or cryoablation (freezing therapy) on the affected area, which should stop the abnormal signals. Ablation works by using a targeted beam of energy to destroy the tissues causing the abnormal signals.
Conditions can progress and it is therefore important to keep you under monitoring. Sometimes the percentage of ventricular ectopics naturally decreases and no further monitoring is required. In rare cases, they can be an early sign of more serious conditions that have not fully developed, which is why you will be followed up and you should make any medical teams know in the future that you
have had these investigations.
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