Our Health: How pioneering op saved Oliver.
He lay in intensive care at Birmingham Children's Hospital at just one week old, covered in tubes and wires, his chest wide open.
His mother Donna Whitehouse sat by his side, unable to hold him and still in shock.
She had taken him home days before to Stonnall, near Brownhills, after an uncomplicated birth. Everything seemed fine. Then he started having trouble feeding and became breathless and exhausted.
He was sent to Walsall Manor Hospital for tests and rushed to Birmingham Children's Hospital's neonatal cardiac unit the same day. By the time he arrived his body was in severe shutdown and he was hours from death.
Donna faced a heartbreaking choice - to let her son die or take a huge risk with surgery to treat his rare heart condition.
He was diagnosed with hypoplastic left heart syndrome, which means the deformed left chambers of the heart are unable to pump blood around the body.
Everything seemed a blur to Donna as the hospital staff explained how Oliver's heart couldn't function properly. Her tiny son was lying practically lifeless and his body was slowly giving up.
Donna and her husband James had just half an hour to make a decision. They chose to let the surgeons operate, if he survived the night.
He did and, after the operation, Oliver's chest was left open for three days in case further emergency surgery was needed. Then he spent two weeks in intensive care.
Donna said: "It was such a shock, because I thought I had a healthy baby. I really can't remember how we got through."
But it was only the start of a lengthy fight for life which is still going on nearly six years later.
In that time Oliver has helped pioneer radical treatment for his condition at Birmingham Children's Hospital.
The neonatal cardiac unit was the first in the country to use a complex treatment called the Norwood Procedure.
Named after the surgeon who developed it, the process involves three operations to re-route blood through the right side of the heart, bypassing the blockages on the left side.
One operation takes place soon after birth, the next at five months and the third at three to four years.
Oliver battled through all three stages, recovered and continued to develop as a normal child.
He visits hospital for regular check-ups as an out-patient, because his heart is being kept from failing by drugs. He is about to celebrate his sixth birthday.
Donna, aged 34, said: "We just got on with it, because we have another child, Daniel, to think about.
"Oliver went to mother and toddler group and playgroup and reached all the developmental milestones a child is expected to reach.
"He's amazed everyone and we let him do as much as he can.
"I used to worry but then I realised he has to be given the chance to lead a normal life, not to be wrapped in cotton wool."
The Norwood Procedure has been used for only six years at Birmingham Children's Hospital and 150 children have been treated, with mixed success. Only 55 per cent survive all three stages.
Suzie Hutchinson, cardiac liaison sister at Birmingham Children's Hospital, said: "Until recently this condition wasn't treated and babies died within days.
"Some parents still choose to let their babies die but it is the element of choice that is so important.
"We aim to provide as much information as possible to allow an informed decision to be made."
Oliver and his family are vital to the hospital in developing their understanding of the condition and treatment.
Suzie Hutchinson said: "Every single patient is another key to more information. We call him The Professor because he gives as good as he gets and other parents facing the same dilemma can see why we bother to try.
"Oliver was one of the first patients in the country to have this treatment and he is six now, but we are still waiting to see what happens in later years.
"He is very well but still has a degree of heart failure and doesn't have a normal heart.
"Transplant can become an option in teenage years, but the long-term prognosis is not yet known."
There is still opposition to treating hypoplastic left heart syndrome. Some doctors think it is kinder to let babies die.
But Donna said: "It was definitely the right choice for us. Really it all depended on Oliver surviving that first night before the operation.
"In a way, it was his choice to survive."
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|Publication:||Sunday Mercury (Birmingham, England)|
|Date:||Mar 21, 1999|
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