Chilliwack, BC – UPDATE – Inclusion BC calls for an independent inquiry into the issues related to the threat of the removal of life sustaining support for baby Mary Jane Pierce and the role and involvement of the Ministry of Children and Family Development.
Annette Delaplace, Inclusion BC past president and parent of a daughter with cerebral palsy and complex medical needs says, “The presence of a disability is not sufficient reason to end life sustaining treatment in the short or long term. Many Canadians with disabilities, including those born with or having acquired complex medical needs and life-long disabilities live full lives in their community.” All too often the presence of disability is used to withdraw or withhold life sustaining medical support and intervention.
“This is an extraordinarily hard time for parents,” says Jackie Carpenter, president of Inclusion BC and the parent of a son with a disability. “More than anything, parents need support. They don’t need to be in court, defending their right to parent.”
Mary Jane’s parents reported they were pressured and misled into signing an interim custody order, which gave the Ministry legal authority to transfer Mary Jane to palliative care, remove life support and let her die. They were told that their epilepsy would render them unable to care for Mary Jane and if they refused to sign the custody order, all future children would be removed from their care.
Parents with disabilities and parents of children with disabilities frequently feel unduly subject to the power of social services and child protection systems. In this case, the parents were coerced and threatened to sign the interim order.
“At five months, Mary Jane has fought hard to survive a premature birth and a serious illness. She’s already beat the odds and her parents remain committed to her right to receive ongoing medical care,” states Faith Bodnar, Inclusion BC’s Executive Director. With respect to the pressure to sign the interim custody order, Bodnar added, “It is unconscionable that this family was pressured to sign a custody order that would result in the death of their daughter; the very thing they were fighting to prevent. Quite frankly it is morally corrupt.”
Pierce and Arnold won a temporary injunction to stop the transfer and to keep Mary Jane in the hospital on a ventilator, but their plight to save their daughter’s life has just begun. This life and death struggle impacts all people with disabilities and their families, including those who require medical supports. Inclusion BC is fully committed to ensuring that all those with disabilities, including Mary Jane receive the medical support and care they need to maintain their lives.
Inclusion BC is a provincial federation which for more than 60 years has advocated for the rights of people with developmental disabilities and their families to access the supports they need to live full lives in the community. We are a strong federation including over 70 member agencies, families with children with special needs and adults with developmental disabilities and community champions.
Original Story from CBC – A Chilliwack couple fighting to keep their four-month-old baby alive won a temporary injunction Tuesday at B.C. Supreme Court to stop doctors from removing life-support.
Mary Jane Pierce was born prematurely at 25 weeks, and has been in hospital since she was born, with multiple serious health problems, including brain bleeding, cerebral palsy, infections and severe seizures. She remains on a ventilator at B.C. Women’s Hospital.
Her parents, Michelle Arnold and Justin Pierce, both 21, say they were pressured last Friday into signing temporary custody of Mary Jane over to the care of an agency under the province’s Ministry of Children and Family Development.
By Monday, the doctor caring for Mary Jane planned to remove the ventilator and transfer the infant to palliative care, according to an affidavit from the parents’ lawyer.
Pierce said they never consented to that.
“They thought that she wasn’t going to make it. So the ministry got involved and tried to pull her off life-support without our permission,” he told CBC News.
An hour before the ventilator was to be removed Tuesday morning, a B.C. Supreme Court judge granted the injunction, according to Jordan Grey of the Hayley Rose Foundation, which has been helping the young couple.
“We presented our case … saying there isn’t enough evidence that this baby is suffering,” said Grey.
Plan to remove life-support unclear
It’s not clear who decided the infant’s ventilator should be removed, or on what basis that decision was made.
The Ministry of Children and Family Development said it could not comment on the specifics of the case, but said in general, “a delegated agency would work with the family to make the best possible decisions.”
It also said “the wishes of the biological parents would not be contested — and the ministry does not and would not consent to a DNR [do not resuscitate order] upon removal.”
It’s also not clear why social services became involved in the care of Mary Jane.
The couple allege they were told “that if they did not agree to allowing [the agency] to have temporary custody, all future children of theirs would be taken into care immediately upon birth,” according to their lawyer’s affidavit.
Pierce told CBC News the ministry did not consider him and the child’s mother to be fit parents to care for a daughter with disabilities, as they have epilepsy themselves.
‘There is still somebody there’
Mary Jane’s parents have been told she has little to no brain function, but her father said he’s seen her open her eyes and respond to various stimuli.
“I definitely feel like there is still somebody there,” said Pierce.
“She’ll grab your finger. You tickle her foot, she’ll kick you. She definitely has a lot of response. If you talk to her she’ll definitely open her eyes and look at you.”
He said she’s being treated with cannabis oil, with the hospital’s permission, which has helped reduce her seizures.
B.C. Women’s Hospital and Health Centre also declined to discuss specifics of the infant’s care.
“Situations such as this one are difficult for everyone involved and the team at B.C. Women’s Hospital will continue to work with the family and caregivers to make the best possible decisions,” said the statement attributed to Cheryl Davies, senior vice-president of patient care services.