'Every day we feared our baby might die'

By Jane Elliott
Health reporter, BBC News

Charlie at christening with mum, Liz, and dad, Russell

Liz Weller and partner Russell Hall recently celebrated the christening of their baby Charlie.

It was a happy time for the family with Charlie looking gorgeous in his white sailor suit and christening robe.

But everyone was well aware of just how different it could have been for little Charlie had it not been for the expertise of staff at the Royal Brompton, who are world leaders in the area of cardiac surgery.

At her routine five-month scan, sonographers noticed a shadow over Liz's baby's heart and suspected a problem.

Scan

A more detailed scan revealed that her fourth baby had severe aortic stenosis (narrowing of the heart valve), which was expected to worsen before birth.

Liz and Russell were told that there was little hope that the baby, now aged nine months, would survive and that they could have a termination.

We were prepared to go anywhere in the world to give our baby a chance Liz Weller

"But we were not going to give up on him," said Liz.

"We were prepared to go anywhere in the world to give our baby a chance.

"We trawled the internet and read that we might be able to get surgery in Boston, but then we were told that it was also possible at the Royal Brompton, in London.

"And we went to meet Dr Julene Carvalho, a foetal cardiologist."

Charlie just minutes after birth

She scanned Liz and confirmed the diagnosis.

She warned that the prognosis was poor, but said that if the heart continued to work and if the baby could get to 35 weeks gestation and 1.5kg (3.3 pounds) in weight then he should be strong enough for a valve operation.

"His outlook was so bleak," said Liz, a neonatal nurse from Surrey.

"They never gave us a percentage for survival chances, but we knew he was so vulnerable. We knew that if we left hospital with a live baby that it would be a miracle.

"We knew we faced 13 weeks of waking up each day and wondering whether he was still alive."

Monitoring

Each week Liz was scanned and at 35 weeks doctors decided Charlie was the right weight and needed to be delivered, so she was taken to the nearby Chelsea and Westminster for a caesarean - the Royal Brompton does not have a maternity unit.

After his birth Liz was allowed a brief cuddle before Charlie was rushed to the Royal Brompton for his valvoplasty (valve stretching).

For the next couple of days Liz, who remained at the Chelsea and Westminster, had to rely on partner Russell's snapshots and regular phone calls to the hospital to see how he was progressing.

When she was discharged she stayed with Charlie at the hospital and after just nine days he too was allowed home.

Big sister Evie meets Charlie for the first time

"He was home so quickly. We had nothing ready for him.

"I had just not expected to take home a live baby. Nothing was ready.

"The staff at the hospital were delighted by how well he had done.

"It is almost a miracle and we put it down to the power of positive thinking and an awful lot of prayer."

Liz said the hospital staff had been 'outstanding' and had given her son the gift of life.

Hope

Dr Michael Rigby, who carried out Charlie's operation, said that although he would need further operations as he grows, that his outlook is very promising.

"The result in Charlie's case is spectacular even though I say it myself."

He said that if babies like Charlie can be kept well enough in the womb for a healthy delivery then the outlook was brighter than if they needed surgery in utero.

Dr Carvalho said that a skilled sonographer could pick up initial problems at the 20-week scan even though the baby's heart is tiny - the size of the tip of a thumb.

And she said that despite the poor prognosis, Charlie's recovery had been very good.

"The baby did very well. We are always aware that there can be complications, but there were none."