Families head to Chicago for hope

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Doctors in Chicago, Illinois, helped the youngster from Northern Ireland By Tara Mills BBC Newsline

Families of some children with a severe form of epilepsy have complained about their treatment at the Royal Victoria Hospital in Belfast.

Billy Caldwell was sent home from the hospital after being told nothing else could be done for him, but his mother took him for treatment to Chicago - he is now aged nearly four and is learning to walk and talk.

Other families have been following in their footsteps and have had to raise thousands of pounds to fund treatment in the United States - some have had to leave other children behind to make the trips.

When Gary McCann and Mikela Maguire found out they were going to have a baby they were overjoyed.

But after a difficult labour their joy turned to worry when they found out their baby girl, Katie, had brain damage and a severe form of epilepsy.

They claim their consultant - Dr Donncha Hanrahan - refused their request for a second opinion about their daughter's condition.

"Our first intention was to get a second opinion which quite bluntly we were refused - it was then we knew that Katie's right to life was being violated and we knew we were on the right track," Mikela said.

Dr Hanrahan has declined to comment about this case.

But papers seen by the BBC show that after the family complained to Health Minister Michael McGimpsey about Dr Hanrahan, he said he "had not refused to refer for a second opinion" but felt it "would not help" Katie to go to Great Ormond Street for a second opinion.

Mikela Maguire said they had to go to Chicago for treatment

The family were eventually offered an appointment, but by then they had already decided to go to Chicago.

And it was there they say for the first time they were given hope about Katie's future when they met specialist Dr Douglas Nordli.

"We asked did he think Katie was going to die and basically he said there was no tag on Katie's toe - that he could not see any possible reason that Katie was going to die," Gary said.

They said the treatment in Chicago has been amazing. Katie can almost sit unaided now and is able to hold a toy. Something unthinkable before.

The family said going to Chicago has been crucial for Katie's development but leaving the other children behind had been heartbreaking.

"It wasn't an easy decision to make. I literally feel as if I'm being cut in two. I know I have to go for Katie but leaving the other two behind," Mikela said.

Five families have now travelled to Chicago.

All the children have different needs - but their families share a frustration with the service available in Northern Ireland.

There are about 200 children with epilepsy under the care of the Royal at any one time.

Only a small number have this severe form of the condition.

Some of those who have not been able to travel to Chicago have said they are unhappy with the Royal.

Johanne Conlin's daughter, Ellie, has intractable epilepsy - but unlike the others she was able to walk and had started to babble at the age of 14 months.

One of her seizures caused brain damage and Ellie is now unable to walk or talk.

Johanne said she was devastated and felt more could have been done.

"It's heartbreaking, she's a completely different child," she said.

The hospital said it delivered a good standard of care

"We have a disabled child now, something that we hadn't got and we had a perfectly normal child and it's hard to look back and see that. She'll need my care for the rest of her life. I don't care who they are but no-one ever wanted this for their child."

Two other families the BBC have spoken to have made formal complaints to the Royal.

The hospital said it has received 10 complaints about paediatric neurology over the last 12 months. Half of those were about waiting times.

Gary and Mikela went to see the health minister, the chief medical officer and are even trying to meet the prime minister.

"No one has ever given us an answer as to why Katie was in the condition she was under and no one has ever given us an apology for that behaviour," Gary said.

"If you were in my position what would you do? Would you not want the best for your child and when someone hands you death on one hand and hope on the other you take it," Mikela said.

"And I'm only asking the government to give us that hope at home."

Dr Hanrahan declined to comment on any of the cases. But the hospital's associate medical director Dr Heather Steen said she had "complete faith" in all her staff.

"The Belfast Trust is confident that all the paediatricians within the Royal Belfast Hospital are carrying out competent roles and delivering good standard care," she said.

Katie McCann has now returned to Chicago for more treatment. Her parents have no idea what the future holds for Katie, but for as long as they can they want to get her the best possible care and they believe that is in Chicago.