Arlo is our 9-month-old son, our beautiful and strong cardiac warrior; prenatally diagnosed with multiple congenital heart defects but more importantly the worst heart defect; Hypoplastic Left Heart Syndrome. Arlo’s condition is life-limiting and life threatening, with a prognosis of approximately but most likely a maximum of 15 years of life.

When Arlo was born, he was doing well, but at 5 weeks of age he deteriorated rapidly due to him having severe pulmonary stenosis; resulting in him needing two lifesaving open heart surgeries at the age of 7 weeks and 9 weeks. These surgeries ensured there was blood supply going to Arlo’s lungs.

We spent over 2 months in hospital with Arlo predominantly in the Paediatric Intensive Care Unit. Arlo underwent 3 cardiac catheter procedures, two open heart surgeries, a lung infection, chest infection, sepsis, his chest remained open for 3 weeks, he had 6 chest drains, significant amounts of medication and the most significant experiences for us, is that he went into peri-arrest on three occasions. Arlo remained ventilated and in an induced coma during this period of time to give his body the best opportunity to fight and recover.

Arlo has managed to fight his way home and is currently doing well to develop and enjoy his life the best he can alongside his favourite person in the world, his big brother.

Although Arlo managed to fight and make his way home, this is not the end of the road for our warrior, Arlo will require more surgery to keep him alive for as long as we possibly can. At current, Arlo is on a single-ventricle pathway which will require one more surgery called the Fontan Procedure hopefully taking him to his teenage years; we have been advised Arlo is unlikely to be a candidate for a transplant due to damage to his other organs caused by his poor circulation.

Struggling to accept that it is likely we will lose our son as a child, we have been exploring options around the world that Arlo might be a candidate for. We are currently in the process of transferring Arlo’s care to Birmingham Childrens Hospital whilst getting a 2nd opinion from Boston Childrens Hospital in America regarding a likely two-part potential surgery that would be life changing for Arlo and his prognosis (1.5 ventricle or bi-ventricle).

We are looking to raise money as the surgeries in America have been given an approximate figure of $900,000. If Arlo is not a candidate for surgery in America, then we would split the money between trying to provide the best life we can to our son whilst he is alive and well enough to travel, explore and enjoy life and donating to charities who directly impact and support the lives of people affected by congenital heart defects.