Hi my name is Darcie and my parents say I’m the bravest baby ever!! I have an identical twin sister called Harper, a big sister called Caitlin and a big brother called Bailey. In December 2019, when I was 7 months old, I was diagnosed with an extremely rare heart condition called Brugada Syndrome after suffering a cardiac arrest. Brugada Syndrome is an arrhythmia heart condition that makes my heart beat dangerously fast which can cause sudden cardiac arrest and be fatal. I want to share my story with you to raise awareness for my condition as  I’m believed to be the youngest baby in the UK to have Brugada Syndrome and be fitted with a lifesaving Implantable Cardioverter Defibrillator (ICD) device.

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Miracle Baby

Darcie and Harper both became ill with a cough and cold on Christmas Day 2019. On Boxing Day they both had high fevers which was controlled with Calpol but although Harper seems to recover well from her fever, Darcie was still restless on Boxing Day evening and continued to have a fever the following day. She seemed ok in the morning, playing with Harper but dramatically went downhill a couple of hours later - she went lethargic, grey in colour, sweaty and limp. We took her to our GP, but Darcie’s heartbeat was so fast and irregular the GP couldn’t trace it properly and told us she’d have to call for an ambulance. We thought it was more precautionary than anything else and didn’t realise the severity of what was happening to Darcie. The paramedics arrived within minutes and took us to the ambulance where she was monitored on an ECG where the readings fluctuated between 200-300 beats per minute throughout the 20-minute journey to Worcester Royal Hospital. In the ambulance, Darcie started to turn blue so was given oxygen to help her breathe. On arrival at hospital a nurse was waiting for us and rushed us to a side room where Darcie was attached to another ECG machine where her heart was beating constantly at 310 beats per minute. A doctor came immediately and told the nurse to put resuscitation pads on her chest and raced her through to Resus where lots of doctors surrounded her trying to figure out what was happening to her little body and what to do to bring her heart rate down to a normal rate. It was then that we knew how serious Darcie’s situation was as the doctors explained they’d never seen anything like this before in a baby - but it didn’t sink in. We were told that she may need her heart to be shocked by a defibrillator to shock it back into a normal rhythm. It all happened so fast. She was given a very high dose of a drug called amiodarone through veins in her feet after not being able to find a vein elsewhere which thankfully stabilised her heart rate – the drug basically shut her other organs down to focus on her heart. However, the doctors were still puzzled by the ECG readings and what had happened to her. After several hours in Resus, we were told Darcie would need to go to an Intensive Care Unit to be looked after by specialists to investigate what happened. That evening we were transferred by critical care ambulance to the paediatric intensive care unit (PICU) at Birmingham Children’s Hospital (BCH), the ambulance went that fast it felt as though we were flying. The paediatric nurse explained on the way that Darcie’s heart had gone into Ventricular Tachycardia/Ventricular Tachycardia (VT/VF) and told us that much information that it was all a blur. When we arrived at BCH, we surrounded by several cardiologists who had been in touch with the doctors at Worcester. Darcie was sedated almost immediately and had a long line put through into a vein so she could have IV drugs to regulate her heart. She had a scan of her heart which showed it was structurally and functionally normal. She also another ECG where the leads were positioned slightly differently to a normal ECG and it was then that her condition was picked up. We were kept informed of what was going on but none of what happened seemed real especially when we were told she may have an extremely rare heart condition.

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After another ECG the next day, the cardiologists confirmed that she had Type 1 Brugada Syndrome – a condition that causes the heart to go into lethal arrhythmia due to the reduction of sodium entering the heart and can be fatal. We also received some stark news that was extremely hard to take; that babies believed to have Brugada are usually presented dead as none of the specialists had seen Brugada in a baby before which was tremendously shocking but also made us realise how lucky Darcie was to still be here. It was explained to us that Sudden Infant Death Syndrome (SIDs) is believed to be linked to Brugada Syndrome as most fatalities happen whilst sleeping or at rest. Thankfully Darcie’s symptoms occurred during the day and words can’t explain how fortunate we are for the events that happened that day – we still don’t think we’ve had chance to digest any of this information. We were also told Darcie's risk of sudden cardiac death was extremely high and we were informed under no uncertain terms that Darcie may not be as lucky if her heart goes into abnormal rhythm again. Due to this devastating news we were told she would need surgery to have a ICD fitted as no cure is available for her condition but the ICD would be life saving for her.

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We were told there was a risk with the surgery as Darcie is believed to be the youngest baby to be fitted with the device and the device needed to be implanted in her abdomen as she’s too small to fit it beneath her collarbone where adults would usually have it. The risks of the operation outweighed anything else though and we knew she needed it. The device will be her Guardian Angel if Darcie’s heart rate goes into abnormal rhythm again and will shock her heart back to a normal rate and the pacemaker function will pace her heart if it beats too slowly. She’ll need the device to be replaced throughout her life when the battery runs out and is expected to have another 2 or 3 operations before she reaches adulthood.

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After a week of being in hospital, Darcie went into surgery to have her ICD fitted. After the longest morning ever and pacing the hospital corridors for around 4 and a half hours we bumped into the surgeon who told us the surgery had been a success which was a huge relief – we both hugged the surgeon and burst into tears. Seeing Darcie after surgery was so emotional as she was drowsy and hooked up to lots of machines including a chest pump so we couldn’t pick her up properly. She slept the whole day and the following day when she woke up she didn’t look like herself as she had ballooned up so was given some drugs to help. After a very long 11 days in hospital Darcie was discharged and a very emotional reunion with Harper followed – they say identical twins have an unbelievable connection and we can honestly vouch for that when they saw each other for the first time!

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Long journey ahead

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We learnt that her fever on Boxing Day had triggered her cardiac arrest and unmasked Brugada Syndrome so we have to be extremely cautious when she becomes ill, especially with a fever. Additionally, the syndrome can be genetic so Harper, Bailey and Caitlin, were tested for the syndrome by ECG during Darcie’s first hospital admission. Although their ECG’s were normal in 2019 further tests would be needed, including blood tests for genetic testing and stress testing.

 

Although Darcie recovered well from surgery, she never regained her usual colour and 3 weeks later she was back in hospital. She had another fever which we couldn’t control with Calpol, after going to A&E on advice from our GP she was once again rushed to Worcester Royal Hospital in an ambulance. After 3 days she was transferred to BCH to treat an infection on her ICD leads where she had aggressive IV antibiotics. We couldn’t believe we were back in hospital again so soon but knew Darcie was well looked after. After 5 days on IV all of her veins had been poked and prodded that much that she was unable to have IV anymore, so she had to have inter-muscular injections instead for 2 days followed by oral antibiotics for 5 days.

 

It was an extremely emotional and stressful period for us all, but can’t thank everyone enough who helped Darcie in hospital and supported us through this time. When something like this happens, it puts things into perspective and every day we appreciate life a little more – even the sleepless nights from twins!! It’s going to be a long journey ahead of us but we have a lot of support to get us through and a dedicated cardiac team at BCH. Darcie may be little but she’s the strongest person we know and our true inspiration.