Page last updated at 13:13 GMT, Friday, 21 November 2008

'Superglue' brain op for toddler

By Martin Hutchinson

Ella-Grace Honeyman
Ella-Grace went to the US for surgery

The parents of a 17-month-old girl have told how surgeons used glue to seal tiny brain blood vessels that were threatening her life.

Laura and Ryan Honeyman, from Horsford in Norfolk, first took their daughter Ella-Grace to France, then to the US to improve her survival chances.

They had initially been told by doctors that her problem was inoperable.

She faces even more challenging and expensive surgery, which the family hope to raise funds to finance.

Ella-Grace was born with a rare condition called Vein of Galen Malformation, in which blood vessels supplying the brain are wrongly connected to the veins which drain blood away, leading to problems with excess blood pressure in some of them.

This can cause a swelling of the vessel called an aneurysm, which can burst with fatal consequences, and too much fluid in the brain, which can lead to developmental delay and even seizures.

We knew that something could always go wrong - but if you know we have put her in the best hands you won't question whether there is something else you could have done."
Mother Laura Honeyman

Ella-Grace underwent the eight-hour operation in New York last Wednesday - but is already back home playing.

The surgical team inserted a tiny tube into her groin, then passed it up through blood vessels all the way to the brain.

There, drops of glue were used to block some of the malformed blood vessels which were causing the problem.

This has partly relieved the extra pressure, but not wholly corrected the problem.

Laura described her journey from diagnosis to last week's operation as a "rollercoaster".

She said: "People used to say that we would never be able to have a day without thinking about her condition, but we have to get back to normality.

"We are just thankful that the operation went well and Ella-Grace is developing and is normal at this point."

Success rates

In fact there are two centres which carry out the delicate operation in the UK, but they have only been doing this in recent years, and, with the prospect of lower success rates, Ella-Grace's parents turned instead to the operation's pioneers, first in a Parisien hospital.

Ella-Grace, her mother and Dr Alejandro Berenstein

Laura said: "We felt that they had more experience, and we just wanted to get the best treatment we could for her."

However, just days after the first in a series of procedures, the surgeon involved died suddenly, and they were forced to go to his New York collaborator, Dr Alejandro Berenstein, from the Beth Israel Medical Center.

This also meant the costs rose - last week's operation cost approximately $61,500 (41,000), paid for by fundraising in the local community.

"We knew that something could always go wrong," said Laura, "But if you know we have put her in the best hands you won't question whether there is something else you could have done."

More complex

A second US operation could happen as soon as next spring, although Ella-Grace's brain blood vessels will never function in a completely normal way, and could need further operations as she grows.

Laura said that the next operation will focus on the smallest capillary blood vessels, and is likely to be the most delicate so far.

"So far the surgeons have dealt with the motorways, and the 'A' roads - now they tell us they are moving onto the country lanes."

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