By April Mitchinson

A DUNDEE family is considering taking legal action against NHS Tayside after doctors wrongly diagnosed their infant daughter with a potentially fatal disease.

Kris and Sheenagh Farrell of Kirkton were told just days before Christmas by doctors at Ninewells Hospital in Dundee that their 20-month-old daughter Kaydee suffered from spinal muscular atrophy (SMA), a neuromuscular condition that would cause her muscles to waste away and ultimately result in her premature death.

The medical bombshell left the young couple stricken and instead of enjoying the festive season they were forced to come to terms with the news and to speculate how much time they had left with their child.

Now, however, their anguish has turned to anger as further testing has revealed Kaydee actually suffers from a less severe variant of the disease, leaving doctors unable to confirm exactly what’s wrong with her, how long she will live and what quality of life she will enjoy.

“We had a meeting with the doctor just before Christmas where she told us she thought Kaydee had between the severe type one or type two level SMA,” Mr Farrell said, explaining that there are five types of SMA, with type one the most severe.

“The doctor said she was almost certain Kaydee has SMA and went on to give us all the information about the illness. I didn’t know if I was going to have to organise my child’s funeral or what.

“This whole episode has broken my family’s heart, when someone tells you that your child could be taken away from you. We couldn’t celebrate Christmas or New Year, I mean what did we have to celebrate?”

The family spent seven agonising weeks mulling over the doctor’s clinical diagnosis only to be told that information was inaccurate and that she actually had a variant of SMA, which the family say is less severe.

The Farrells have now asked for a second opinion and have arranged for Kaydee to be seen by doctors in the paediatric neurology department of Alder Hey Children’s Hospital in Liverpool.

“We’ve had to push for everything so far because nobody will listen to us,” Mrs Farrell said.

“Nobody is being straight with us and it seems as though we’ve been kept in the dark about everything. I just feel that we’ve been treated like absolute rubbish.”

The Farrells said they have had serious concerns over Kaydee’s health since her birth in May 2006 and last year the family made a formal complaint about her treatment to NHS bosses.

At just four days old Kaydee was admitted to the special care baby unit at Ninewells with cyanotic episodes (bluish discoloration of the skin and mucous membranes due to not enough oxygen in the blood) and later at six months she was referred to the paediatric clinic with possible gastro-oesophageal reflux after difficulty feeding and struggling to keep anything down.

She was then referred to the Royal Hospital for Sick Children in Edinburgh after further difficulty eating for a feeding tube, however doctors decided to postpone surgery after Kaydee showed improvement.

Since then she has endured numerous tests, including a brain and cervical spine MRI, a muscle biopsy, PH studies and electromyography, all reportedly inconclusive.

“We still don’t know exactly what’s wrong with her except that she has a developmental delay and is 15 months behind where she should be,” Mrs Farrell said.

“We’re 20 months down the line and no-one can tell me what’s wrong with my child. Basically, we don’t have much faith in the doctors at Ninewells anymore.”

The Farrells said doctors had been unable to tell them if Kaydee’s condition was genetic.

“We don’t even know if we can have any more children,” Mr Farrell said.

“If we did, we would want them to live a normal life without the difficulties Kaydee experiences, but the doctors can’t seem to tell us anything.”

Jane Duncan, NHS Tayside senior communications manager, last night said, “We are acutely aware that this is a difficult situation for this family who are very understandably anxious about their daughter.

“We also acknowledge the family’s concerns over the continuing investigations into their daughter’s condition.

“This child has been seen by a number of paediatricians and consultants here in Tayside and clearly has a very unusual set of symptoms which is proving extremely difficult to provide an exact diagnosis for.

“At her family’s request a further opinion from a specialist neurologist at Alder Hey Children’s Hospital in Liverpool has been arranged and Kaydee’s consultant in Tayside will continue to liaise with both her family and the paediatric neurologist there.

“We will continue to do everything we can to care for and support Kaydee and her family and keep them informed and, in fact, the family have a meeting already arranged for this week with their daughter’s consultant and a neurologist to discuss the situation again,” she added.