For the parents of 200 children diagnosed with Hypoplastic Left Heart Syndrome in the UK each year, the choices involved are agonising. LOUISE TWEDDELL spoke to one family about their predicament.
LOOKING into the smiling, innocent face of four-month-old Aiden Joseph, it is hard to imagine the trauma his young body has already suffered.
Seven days after he was born doctors cracked through his tiny chest to perform open heart surgery.
There was a 20-per-cent chance his 5lb 2oz frame would not survive the surgery.
It was a day Aiden's parents Elizabeth, 23, and Kevin, 25, of Phoenix Place, Dartford, had feared and agonised over since they were told their unborn son had the syndrome.
The condition prevents the left side of the heart from developing, which makes it unable to pump blood to the major organs of the body.
Aiden's parents heard the devastating news about his condition after a routine scan at Darent Valley Hospital revealed complications 21 weeks into Elizabeth's pregnancy.
On December 14 last year she was transferred to St Thomas' Hospital, London, and the teenage sweethearts, who married only seven months earlier, were given three choices.
The first was to abort the pregnancy, meaning Aiden would have been stillborn.
Another possibility was to continue with the pregnancy and allow Aiden to die naturally within seven days of birth.
The third choice was an operation known as the Norwood procedure. This involved a five-and-a-half hour operation which would see Aiden's blood flow re-routed by by-passing the blockage on the left of the heart.
Elizabeth said: "The news was heartbreaking.
"I felt like something had physically whacked me in the face. He was growing inside me but the only thing keeping him alive was the umbilical cord."
The couple, who have two other children - Harrison, three and Isabelle, two - battled with what choice to make for weeks.
Nail technician Elizabeth added: "There was no way I could allow them to kill my son and then give birth to him.
"And how could I give birth to him, fall in love with him and then watch him die?"
The Josephs felt isolated as friends and family told them to abort their baby but it was a conversation with Elizabeth's sister Rebecca which finally made up their minds.
She told Elizabeth to give Aiden a chance of life - and on January 5 the decision was made.
Elizabeth gave birth to Aiden on April 12 after he was induced two weeks early by doctors at St Thomas' Hospital.
She said: "He was very pink when he was born, which I remember thinking was strange as I thought he would be blue.
"I got a quick cuddle and a photo and they whisked him off in an incubator for checks."
Aiden's operation lasted an hour longer than expected but everything went well.
He was discharged on April 27 and, four months on, life has settled into a routine.
Aiden faces two more operations before his third birthday and a heart transplant before reaching 30.
He will never be able to take part in energetic sport and could suffer a heart attack at any time.
Elizabeth said: "I'm nervous about the future but we have been given excellent help by both hospitals.
"We try to take each day as it comes and hope there will be medical advances.
"He is so precious to us. I know we did the right thing."
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