Brighton mum's fear over heart unit closure (From The Argus)

Brighton mum's fear over heart unit closure

3:40pm Tuesday 10th July 2012 in News

FEARS: Susanna Nicholls and son Daniel

The mother of a little boy living with a rare illness has spoken of her fears for her child following a decision to close a children’s heart unit.

Susanna Nicholls says losing the service will cut off a vital lifeline for her six-year-old son Daniel.

Daniel suffers from spinal muscular atrophy which has affected his muscles and left him unable to crawl, walk or sit up unaided.

He needs a machine at night to help him breathe and has been in and out of hospital all his life.

Daniel, from Patcham, has been treated by the specialist respiratory team at the Royal Brompton Hospital in London on many occasions.

Staff also once saved his life when one of his lungs partially collapsed.

As part of the plans to close the heart unit, the Royal Brompton will also lose its children’s intensive care unit.

This, in turn, will affect its world-renowned paediatric respiratory service, which specialises in the treatment of children with cystic fibrosis, severe asthma and a number of other severe and complex respiratory conditions.

Without the back-up of intensive care and on-site anaesthesia, medics will not be able to undertake the more complex specialist treatments they do now, because they consider it unsafe to do so.

The hospital’s respiratory consultants will move to other jobs and their expertise and research lost.

Mrs Nicholls, 31, said: “I am really, really worried.

“The team know Daniel really well and understand his condition. Even when we go to visit the local children’s hospital in Brighton, we always contact the Brompton team.

“If they are no longer there, I don’t know what we are going to do or who we will be able to turn to.

“We depend on that service but now we are left in limbo.

“Everything is so uncertain at the moment.

“I’m still trying to work out why losing this department will in any way improve Daniel’s care.”

Despite a high profile campaign, the joint committee of primary care trusts announced last week that the heart unit would close. It is expected to happen by 2014.