We had to move to South Africa so we could save our sick baby's life

0 Comments | Sunday Mirror, Mar 9, 2003 | by DONNA CARTON

LITTLE Brogen O'Rourke will be one year old tomorrow but her party will take place thousands of miles from family and friends.

Brogen, mum Lisa, 29, and dad Fintan, 36, have just begun a new life in South Africa, forced into exile by a cash-strapped health service.

From the moment Brogen was born, life has been a constant struggle for survival and no one thought the seriously ill, brain-damaged baby would make it to her first birthday.

Devoted dad Fintan calls her "our little miracle" but said if they hadn't sold up and moved to Pretoria, his daughter would certainly not see her second.

He said: "Doctors in South Africa were appalled at the lack of care Brogen was receiving and told us bluntly, don't leave her to die back home; bring her here."

The Irishman decided he had no choice but to sell his home and emigrate for the sake of his little girl.

Brogen has cerebral palsy, is blind, deaf and suffers from epilepsy. She has had pneumonia six times in her short life, each infection weakening her body.

The little girl can't move by herself or feed normally and often needs assistance to breathe.

She needs intensive therapy but her loving parents discovered that the health service couldn't provide that.

Fintan, originally from Westport, Co. Mayo, said: "For years, like responsible people, we paid our taxes but when it came time to getting something back, it just wasn't there.

"Brogen spent 10 days on a life support machine when she was born.

"Then she spent seven months in hospital and her treatment there was first class but when it came time to bring Brogen home we realised she wasn't going to get the same care.

"Since November, when we brought her home, we have been fighting a losing battle for the services she desperately needs."

Brogen needs physiotherapy to prevent her muscles from seizing up. Speech therapy is vital to teach her to suck and swallow, which she can't do at the moment and she needs occupational therapy to help improve the quality of her life.

Fintan said: "When we first brought Brogen home, we were terrified but delighted, too. But she kept turning blue and we'd have to push our knuckles into her chest to jolt her into breathing again. We saved her life about 20 times doing that. It was very distressing.

"She then went back to hospital where she stayed for seven months on high dependency care.

"In hospital Brogen had 21 physio sessions a week but we were offered one a week as home care.

"For the first two weeks the physio didn't even come and we were given no speech therapy or occupational therapy.

"In fact, it wasn't until I began researching the South Africa clinics that I realised just how vital speech therapy is for Brogen. If she is ever to get rid of the tubes through which she feeds she must learn to suck and swallow and only speech therapy can teach her that."

Fintan and Lisa became very angry at their predicament and began to research cerebral palsy care on the internet.

"We were outraged that our disabled baby couldn't be cared for in the British health system," said Fintan.

"This government can put billions of pounds into the care of asylum seekers - people who have come here and have put nothing back into society.

"I moved to England from Ireland as a child and we have lived here most of our lives and contributed through work, paying our taxes and doing charity work but we can't get decent health care for our little girl.

"I am not racist and I don't want to stir up racism. I have many friends from various races and there are a great many ethnic minorities who live, work and contribute to society. What I am saying is, why is the NHS being starved of funds by this government?

"Why can so much be pumped without question into, for example, asylum seekers, and yet disabled children can't get decent care?

"If the government was a private company, Tony Blair and Gordon Brown would be sacked by now, forced out by angry shareholders for misappropriation of funds."

Fintan and Lisa learned that South Africa, which has a high incidence of cerebral palsy, has good clinics for the care of children who suffer from it.

Just before Christmas, they took Brogen to Pretoria to be assessed and to see the level of care there.

Fintan said: "We knew immediately what Brogen was missing. There was provision for intensive therapy and doctors told us about various care procedures - in particular, the importance of speech therapy, that we hadn't been told of in England."

The couple went back to Hartlepoole, Cleveland and made plans to sell up and move to Pretoria.

To others it seems a dramatic and indeed very courageous step but to Fintan and Lisa it is simply what is best for Brogen.

Fintan said: "When we found out there was something wrong with Brogen our lives were torn apart. We were heartbroken at the loss of all the things we had hoped for as new parents.

"Even now we cry almost every day for our little girl who has been robbed of so much but we love her with all our hearts and we will do what we can to ensure the life that Brogen lives is the best that she can have.