In August 2021 the unimaginable happened when our little girl Sienna suffered a sudden cardiac arrest at the tender age of just 14 months, thankfully her godmother was able to successfully perform CPR on Sienna to save her life. Immediately afterwards, Sienna had a seizure and continued to be incredibly unstable and in a life threatening condition. Upon arrival at the hospital Sienna’s heart was beating in excess of 300bpm and she remained in resuscitation for some hours to stabilise her condition.

During all of this, Sienna’s brother Theo witnessed everything unfold - something no child should ever have to experience. Theo has resilience and bravery above his age but not through choice, but because his little life was also turned upside down in an instant and we were unable to protect him from the events of the cardiac arrest and subsequent complications.

Due to the complexities of the mentioned events, Sienna’s case was escalated with urgency to The Royal Brompton Hospital whom took over the care of Sienna and our family. Sienna was quickly diagnosed with Brugada Syndrome, a rare and inherited cardiac condition, for which there is sadly no current cure for. This condition is life threatening and therefore Sienna is deemed at a very high risk of future potentially fatal cardiac events so a decision was made to implant an ICD and pacemaker into Sienna’s little body to try and keep her safe from this condition. During this time Sienna was also diagnosed with other complex heart conditions, such as Sick Sinus Syndrome, which is why Sienna also has a pacemaker.

Genetic testing began immediately via The Royal Brompton which quickly diagnosed Sienna’s Mummy, Brother, Grandad and Great Auntie to also have Brugada Syndrome. Genetic testing also heavily suggests that the untimely and sudden death of Sienna’s Great-Grandmother was caused by Brugada Syndrome. Our lives have been turned upside down, family history rewritten, the future of our diagnosed family members uncertain…learning to live with an incurable and life threatening heart condition is not easy, but the help of the Royal Brompton has provided great reassurance to our family during our darkest times. The continued outstanding care of Sienna is truly remarkable and we are lucky to have the most amazing medical team caring for our family. Sienna Beau Crook Crook