A three-year-old boy born with five rare heart conditions is in a race against time to undergo specialist surgery in the US, with the life-saving operation expected to cost £400,000.
Sebastian Silver was born with a complex combination of conditions, including congenitally corrected transposition of the great arteries (ccTGA), a criss-cross heart, an underdeveloped right ventricle, ventricular and atrial septal defects, and Wolff-Parkinson-White syndrome.
Each condition is rare in its own right, but together they create what doctors have described as “an exceptionally rare and perilous clinical picture”.
Sebastian has spent much of his life in and out of Great Ormond Street Hospital (GOSH). A procedure carried out when he was 18 months old led to a life-threatening cardiac arrest.
His mother, Hannah, has now been told that “there are no next steps” for her son in the UK. However, specialists at Boston Children’s Hospital believe he may be able to undergo surgery that could save his life.
A GoFundMe fundraiser launched in September has raised £350,000 so far. A further £50,000 is needed for the operation, along with another £30,000 to cover medical transport, travel and accommodation costs.
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 fundraising target has been reached.
Doctors in Boston plan to perform a specialised double-switch biventricular repair, a procedure intended to balance blood flow between the two chambers of Sebastian’s heart.
Sebastian Silver, three, pictured with his mother, Hannah, and five-year-old sister Sidney, was born with several complex heart conditions
The youngster is in a desperate race against time to receive life-saving surgery in the US. Pictured: Sebastian after an operation at 18 months old
Sebastian’s mother, Hannah, has launched a fundraiser to pay for the operation in the US
Hannah, 42, who works as an executive assistant at Google, told Our News Outlet: “Sebastian is the happiest child. He is always smiling, he loves people and he loves life.
“The chance we have now means absolutely everything to us. I have been fighting to keep this boy alive for three years, and that fight is not over yet.”
Doctors first detected Sebastian’s complex heart conditions during Hannah’s 20-week pregnancy scan, when they noticed that the right side of his heart appeared underdeveloped.
After his birth, Sebastian was transferred to GOSH, where specialists diagnosed him with several rare heart defects.
“I had no idea or understanding that our lives had completely changed,” Hannah said. “The doctors kept telling me his conditions were rare, but the combination was even more unusual. The first two years were horrific for us.”
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She said Sebastian needed to be fed through a tube and could drink only a limited amount of liquid each day. He was frequently unwell and was rushed to hospital several times.
At just two weeks old, he underwent his first operation, having a pulmonary band fitted to prevent too much blood from flowing to his developing lungs. Doctors expected him to require further surgery as he grew.
However, when surgeons attempted to close his ventricular septal defect — commonly known as a hole in the heart — at 18 months, Sebastian suffered a massive cardiac arrest.
Hannah was later told that he survived only because nurses manually pumped his heart until he could be connected to a life-support machine.
“We were given three choices,” Hannah said. “The first was to take him off life support, but he would die. The second was a heart transplant, but doctors said he was not a viable candidate.
“The only remaining option was for doctors to reverse the surgery, although they warned us it was extremely risky.
“I genuinely believe they thought he would not survive the reversal surgery, but he made it through. I think it is a miracle that he is alive.”
Sebastian spent months recovering from the physical effects of the operation and cardiac arrest. He had to learn how to sit up and walk again.
Now three, he is facing the same serious situation he experienced before his operation at GOSH. Doctors have told the family that all other options have been exhausted.
Hannah said it would mean “absolutely everything” if they could travel to the US for the operation
His mother said: “Everything is becoming more difficult for him because he is more active. Walking, eating — everything makes him much more tired, and sometimes, if he exerts himself too much, his nails and lips turn blue.
“When the pulmonary band becomes too tight, he will need more surgery, but the doctors have told us there are no next steps for him.
“The surgery in the US gives us a chance. He will still be fragile, but he will be alive — and he could have a really good quality of life.”
She added: “It gives me hope that I can start talking about Sebastian going to school in two years’ time, or that he will actually get to grow up. I have never been able to think that far ahead with him.
“The chance to do this means absolutely everything.”
Donations can be made through Sebastian’s GoFundMe appeal here
