A fatality inquiry got under way this week into the 2006 death of a 13-year-old girl who died shortly after she left a Morinville-area foster home.
Samantha Martin spent most of her life in provincial foster care but was returned to her biological parents months before her death from an apparent heart condition. She had a rare genetic disorder that soon after her birth required her to be placed in provincial care due to the complexity of her medical needs.
Martin lived the last five months with her biological family in St. Albert but up until that point was in a foster home in the Morinville area.
The inquiry is meant to determine the precise cause of the young girl's death. While the direct cause was cardiac arrest, the inquiry is going to determine what if any factors lead up to that cardiac arrest. The inquiry can not assess any legal responsibility.
In addition to inquiry counsel Dave Syme, Velvet Martin, Samantha's mother, is representing herself, while children's services and the foster parents are represented by legal counsel.
Martin took the stand Monday afternoon, detailing her experiences with children's services and her daughter's short life.
Martin believes the care her daughter received while in the foster system played a role in her death, including seizures Samantha experienced that went untreated.
Martin also chronicled her pregnancy and said that up until Samantha's birth there were no signs of concern. Even after she was born premature and delivered through an emergency Caesarean section there was no indication of problems, but that was short lived, she said.
Genetic testing determined Samantha had tetrasomy 18p, a chromosomal disorder, similar to Down's syndrome.
Martin told the inquiry that doctors advised them to contact children's services to see what type of support they could offer since at the time there was fear Samantha might not be able to walk or speak.
Martin said she was told the best thing for Samantha would be to put her up for adoption so another family with greater means could look after her.
"We were informed it would be a disservice to keep her in our home."
Despite wanting to keep Samantha, the Martin family was convinced they lacked the support needed and did not have the financial means to look after Samantha.
"We thought, wrongly, these are the experts, these people know what they are doing."
Martin told the inquiry she kept in contact with the foster mother and tried to forward research about the condition and, initially, was very pleased with the placement.
But she told the court that later changed and she now believes Samantha was mistreated by the foster parents, who cannot be named under a court order. Ordinarily, children who have spent time in foster care cannot be identified even after their death, but the court lifted that publication ban on Monday.
Rare disorder
Monday morning focused on testimony from two researchers, who detailed the rarity of Samantha's condition.
Dr. Jannine Cody, a geneticist from the University of Texas who has studied the conditions, testified via teleconference that the disorder is exceedingly rare.
"It is really rare, so rare I don't think we even have numbers," she said.
Cody estimated the conditions affected no more than one child in 100,000.
Cody and Dr. Daniel Hale, a professor of pediatrics at the Texas university, testified that the disorder is not well understood. The two are jointly involved in a research institute that is aiming to better understand the syndrome and better inform physicians.
The pair detailed work they had done for a journal article published last year that helped to identify common symptoms of the syndrome and characteristics of those children dealing with it.
The work included reviews of medical histories and charts as well as several clinical assessments of patients in Texas.
The study found that 21 per cent of patients experienced some history of seizures, 24 per cent had some cardiac problems and 32 per cent had gastro-intestinal problems.
In the lead-up to the inquiry, Velvet Martin had raised concerns that her daughter was experiencing seizures that went untreated while at the foster home. That is one of the issues that will be examined during the hearing.
Despite the higher rates of seizure activity, Cody testified that children with this condition generally could live healthy lives and do well.
"We have found overall they are a robust, healthy group of children and young adults."
Hall added such children do not require constant hospitalization or round the clock care.
"They are not generally medically fragile."
Children with the disorder tend to live with their parents or in a group home setting into adulthood, and then can often hold down employment and be somewhat self-sufficient.
"The children do quite well and certainly better than the prognosis most of their parents were given."
The inquiry is scheduled to run for three weeks and hear from a number of witnesses.
The list of individuals set to testify include the foster mother, several representatives from children and youth services, educators at George Vanier School in Morinville and several physicians who treated the young girl.
The foster parents have not taken the stand or been given the opportunity to respond to Martin's accusations.
