Three-year-old Sebastian Silver has been diagnosed with five complex heart conditions, including congenital corrected transposition of the great arteries (ccTGA), criss-cross heart, an underdeveloped right ventricle, ventricular and atrial septal defects, and Wolff-Parkinson-White syndrome. The combination of these conditions is considered exceptionally rare and perilous.
Sebastian has spent a significant portion of his young life in and out of Great Ormond Street Hospital (GOSH) in London. A procedure at 18 months old resulted in a life-threatening cardiac arrest. His mother, Hannah, has been informed that there are no further treatment options for Sebastian in the UK. However, specialists at Boston Children's Hospital in the US believe he is a candidate for a specialized surgery that could save his life.
The estimated cost for the operation is £400,000. An additional £30,000 is needed for medical transport, travel, and accommodation. A GoFundMe fundraiser, launched in September, has raised £350,000 so far, with £50,000 still required to reach the target for the surgery alone.
Hannah, a single mother of two from north London, hopes to travel to the US with Sebastian and his five-year-old sister, Sidney, once the full amount is raised. The planned procedure in Boston is a specialized double switch biventricular repair, designed to balance blood flow between the heart's chambers.
Sebastian's conditions were initially detected during a 20-week pregnancy scan. After his birth, he was transferred to GOSH, where the multiple rare defects were diagnosed. His mother described the first two years of his life as "horrific," recalling his reliance on a feeding tube and frequent hospitalizations.
At two weeks old, Sebastian underwent his first surgery, a pulmonary band to manage blood flow to his lungs. The cardiac arrest occurred 16 months later when doctors attempted to close a hole in his heart. Hannah reported that Sebastian survived only because nurses performed chest compressions until he could be placed on life support.
Doctors presented three options following the cardiac arrest: removing him from life support, a heart transplant (for which he was deemed not viable), or a risky reversal of the surgery. Sebastian survived the reversal, which his mother considers a miracle. He spent months recovering, relearning basic motor skills like sitting and walking.
Now three years old, Sebastian faces challenges as he becomes more active. His mother noted that he tires easily, and his nails and lips sometimes turn blue if he exerts himself too much. While the pulmonary band may require future surgery, doctors have indicated no further options are available in the UK. The surgery in the US offers the prospect of a good quality of life for Sebastian, giving his mother hope that he will have the chance to grow up and attend school.
Donations can be made to Sebastian's GoFundMe appeal.