A COURAGEOUS couple have been allowed to adopt a five-year-old girl in the knowledge that she has a 75% chance of developing Huntington's disease - an incurable hereditary condition which causes personality changes and dementia.
The girl, whose parents both suffer from the condition, has already been rejected by two other families because of their concern for her future health.
The adopting couple have also accepted that the natural parents should be allowed access to their daughter because it will help the girl come to terms with the condition.
In a decision issued at the Court of Session yesterday Lord Hope, the Lord President, said the child was born in November 1990. Her natural parents, who were not married to one another, separated in 1993.
The breakup of the family was due to the fact that both parents suffered from Huntington's disease, a progressive neuro-degenerative condition for which there was no known cure. Although it normally develops in the fourth decade of life, the onset was variable and could develop during childhood.
In November 1991, the girl was taken from her natural parents under a place of safety order and fostered with Mr and Mrs B. A few weeks later, she was returned to her natural parents but in December 1991 she was again taken into care and returned to live with Mr and Mrs B, where she has been ever since.
Lord Hope said attempts were made by the local authority to place her for adoption but two families who had been chosen by the adoption panel decided to reject the placement because of their concern over the child's health.
The judge added: ``Huntington's disease is a genetic condition and where both natural parents suffer from it, there is a 75% chance that their child will also develop the disease.
``The petitioners (Mr and Mrs B) were distressed when they learned that the placements had been unsuccessful. After discussing the proposal with their own children, they took the courageous decision of offering themselves for consideration as adoptive parents.
``Their application was approved by the local authority in March 1994. By that date, they knew that the child had a high risk of contracting the disease.
``Having seen the symptoms of it in the natural parents, they were fully aware of the implications. They were also aware of the benefits to the child of continuing to have access to her natural parents so long as this would not cause her distress.
``They believe that it would also be helpful for the child to know that the only reason why her natural parents have been unable to care for her is that they are now suffering from this disease.''
At a hearing in the case at Kirkcaldy Sheriff Court, the child's natural father agreed to an adoption order as long as he had access to his daughter once a month.
However, the adoption was opposed by the natural mother, who argued that a custody order in favour of Mr and Mrs B would be more appropriate since that had the advantage of not depriving her of her parental rights.
The sheriff at Kirkcaldy decided that the mother's agreement to the adoption should be dispensed with since she was withholding her consent to the adoption unreasonably.
She made an adoption order in favour of Mrs and Mrs B which also provided for access by both parents but the natural mother appealed to the Court of Session against the decision.
Lord Hope, who heard the appeal with Lords Weir and Murray, ruled that the sheriff's approach could not be faulted.
She had decided that if an adoption order was granted the child would have her present uncertainty removed, would know where the adults in her life fitted in before she went to school, and would be secure as a member of a family.
Mr and Mrs B would have the security and responsibility which they needed to plan the child's future with the support they needed to prepare her for the uncertainty she must inevitably face over the considerable risk she had of developing Huntington's disease.
There was evidence from Dr Mary Porteous, a consultant clinical geneticist at Edinburgh's Western General, that it would be of positive benefit to the child to see her natural parents and observe how the disease affected them since this would help her come to terms with it.
Dr Porteous said that as long as access was supervised, the father had, at the moment, a positive role to play because at present he had only mild symptoms. However, the symptoms would get worse and the question of access would have to be reviewed.
As far as the mother was concerned, the consultant again saw no problem as long as the access was supervised.
Lord Hope said the Adoption (Scotland) Act 1978 provided that first consideration must be given to the need to safeguard and promote the welfare of the child throughout its childhood.
``Every other factor, except the natural mother's fears about her own position in regard to access, point strongly in favour of adoption of the child by Mr and Mrs B.''
The only justification advanced on the mother's behalf for withholding her agreement was her wish to be able to exercise control over the access arrangements.
``As first consideration must be given to the child's welfare, the concerns which the mother has about her rights in regard to the condition of unsupervised access must take second place.''
The court decided to refused the mother's appeal, confirm the sheriff's decision to dispense with the mother's consent and grant the adoption order.
Why are you making commenting on The Herald only available to subscribers?
It should have been a safe space for informed debate, somewhere for readers to discuss issues around the biggest stories of the day, but all too often the below the line comments on most websites have become bogged down by off-topic discussions and abuse.
heraldscotland.com is tackling this problem by allowing only subscribers to comment.
We are doing this to improve the experience for our loyal readers and we believe it will reduce the ability of trolls and troublemakers, who occasionally find their way onto our site, to abuse our journalists and readers. We also hope it will help the comments section fulfil its promise as a part of Scotland's conversation with itself.
We are lucky at The Herald. We are read by an informed, educated readership who can add their knowledge and insights to our stories.
That is invaluable.
We are making the subscriber-only change to support our valued readers, who tell us they don't want the site cluttered up with irrelevant comments, untruths and abuse.
In the past, the journalist’s job was to collect and distribute information to the audience. Technology means that readers can shape a discussion. We look forward to hearing from you on heraldscotland.com
Comments & Moderation
Readers’ comments: You are personally liable for the content of any comments you upload to this website, so please act responsibly. We do not pre-moderate or monitor readers’ comments appearing on our websites, but we do post-moderate in response to complaints we receive or otherwise when a potential problem comes to our attention. You can make a complaint by using the ‘report this post’ link . We may then apply our discretion under the user terms to amend or delete comments.
Post moderation is undertaken full-time 9am-6pm on weekdays, and on a part-time basis outwith those hours.
Read the rules hereComments are closed on this article