As a church curate wins permission to challenge the refusal of police to prosecute doctors who carried out a late abortion on a woman who did not want a baby with a clft lip and palate, Barry Nelson talks to North-East families affected by the condition.

EVERY year, a thousand children are born in the UK with either a cleft lip, a cleft palate or a combination of the two conditions. Despite the increasing sophistication of antenatal scanning, the birth of a child with this type of deformity often comes as a complete surprise.

But once they are over the initial shock, the parents can be reassured that these days there is a very good chance of their child being able to lead a normal life after corrective surgery.

That's why shockwaves are being felt by the parents of children born with cleft lips and palates because of a headline-grabbing court case.

Yesterday's victory in the High Court by Church of England curate Joanna Jepson means she can now challenge the refusal of West Mercian police to prosecute doctors who carried out a late abortion on a Herefordshire woman because she did not want a baby with a cleft palate.

The Rev Joanna Jepson from Chester, who herself has had corrective surgery on an inherited jaw defect, says the law should not allow abortions for "trivial reasons."

For legal reasons, few details have been released about the case, but the British Pregnancy Advisory Service has pointed out that in some cases the severity of the condition could be life-threatening.

The BPAS has also called on critics to trust doctors who have to make such difficult decisions.

Meanwhile, West Mercia police say they sought the "best possible medical and legal advice" and acted in accordance with that advice.

What this controversial case demonstrates - to the horror of the Cleft Lip and Palate Association (CLAPA) and many of its members - is that some mothers believe that the prospect of having a child with such a physical deformity is so appalling that they are prepared to have an abortion.

What makes this case even more controversial is the decision of the unnamed mother to go ahead with an abortion after the 24th week of pregnancy, which in normal circumstances would be illegal.

However, the law states that in cases where a severe disability is detected in the unborn child the mother has the option to terminate the pregnancy beyond this date.

The idea that a cleft palate or cleft lip constitutes a "severe disability" is rejected by CLAPA and parents who have gone through the experience of having a child with such a deformity.

Helen Mills from Bishop Auckland has been through the experience of being told her new born child has a deformity which sometimes runs in families and sometimes appears without any previous history.

Now pregnant with her third child, Helen is adamant that she would never consider a termination because of a cleft palate or lip.

"I definitely would not have had a termination even if this baby had a cleft palate or lip, these days it can be repaired to such a high standard. It is not a disability," she says.

"My first child, William, is six now. He was born with a cleft palate but it wasn't diagnosed," she adds.

The difficulty of getting a positive diagnosis in an unborn child is underlined by the fact that no fewer than three specialists were involved in vetting Helen's third baby.

"They have said there is no cleft palate with this baby and of course I am very relieved," she adds. She also got an all clear on her second child, Niall, who is now four.

Helen appreciates that other children are born with more severe cleft abnormalities - in some cases needing many operations during their childhood - but with William the solution to his problem was swift and highly effective.

"William only had one operation when he was three months old. It was a long one, it lasted three hours, but now he is absolutely fine," she adds.

"His cleft palate has been completely repaired, it's been done very well and he looks good."

Her positive experience, reinforced by becoming a parent representative within the CLAPA charity, makes her doubly uneasy about the implications of better antenatal screening in the future.

"I heard a radio programme about the future of parental selection, which sounded a lot like eugenics They used cleft palate as an example of a problem which parents may decide to do without," she adds.

Helen confesses that such talk makes her feel "very uneasy" about the future.

"You wonder just how far people want to take this."

CLAPA, which has a network of 39 branches throughout the UK, is taking a strong line on the case.

GARETH Davies, CLAPA's chief executive, says: "We have no specific details about this case but clearly this incident highlights the many public misconceptions about cleft lip and palate. Termination after 24 weeks for cleft plate and/or a cleft lip brings up issues around whether cleft lip and palate is considered a serious disability or handicap.

"As an organisation we would say that if only a cleft palate/lip is diagnosed - with no other medical complications - then late termination is not something we would condone."

Mr Davies says if the general public had a greater knowledge of the condition "the option of termination might not be considered."

Ms Jepson, whose initial application to mount legal action against Paul West, Chief Constable of Wester Mercia Police, was rejected by a judge last month, recently said: ''We need to resist the belief that the value of human life lies in physical perfection and have a wider understanding of disabilities so that disability is not seen purely in negative terms.''

Another North-East CLAPA member, Debbi Norman from Northallerton, is also very uneasy about the implications of the case.

But in Debbi's case she is reluctant to condemn the mother, simply because not enough is known about the exact circumstances before the termination went ahead.

"We don't really know all the details of this so it is difficult to comment. If it was the case that there were other syndromes present, connected with cleft lip and palate, and she felt she couldn't manage, maybe that was the way to go," she says.

As the mother of a child born with cleft lip and palate - now a typical, boisterous, teenager - Debbi finds it very difficult to see how doctors could deem a child to be severely disabled just because of a cleft lip or palate.

"It is no big handicap, I can't understand why people would want to go down that avenue at all," she adds.

One positive thing about the current controversy is the chance to raise the issue of cleft lip and palate with the general public, says Debbi.

"Next year is CLAPA's sliver jubilee and we will be doing various things in the North-East to raise awareness. We need to make sure that people know the full story before they make any judgements," she says.

*Debbi is willing to answer any questions about cleft lips and palates and can be contacted on (01609) 774399. Alternatively, for background information go to the CLAPA website at www.clapa.com