Saturday February 7, 2009
Page: B1 / FRONT
Section: Saturday Observer
By: Shelley Page
At 7:40 p.m. last March 27, 2008, Pénélope McKeague was born dead.
CPR restarted her heart. Fourteen minutes after birth, she gasped for air.
In the endless days and sleepless nights to follow, the parents were side-swiped first by prognosis, next by exhaustion and then by heartbreak: In order to secure residential care, they must give up custody of their daughter. Shelley Page reports.
– – –
Pénélope McKeague reclines fitfully, eyes half closed, arms twitching, always twitching, fingers fidgeting as though she can’t satisfy an itch. She never smiles or gurgles or meets her mother’s gaze. The eight-month-old has so far missed these milestones. But she’s quiet now. And that is something.
The night before, Pénélope had screamed for four hours, screamed like she was possessed, screamed past exhaustion. Nothing would bring her comfort. Not even a steaming hot bath to loosen her tightening, always tightening, muscles.
Everything makes her frantic. The feel of her clothing. A sudden noise. Her mother’s love.
“She doesn’t like to be cuddled,” Kristine Gavrel says wistfully.
She picks up her daughter and takes her to the kitchen of her west-end Ottawa home where she fills a plastic bag with formula and attaches it to a feeding machine and then to a tube in her daughter’s stomach.
Pénélope will likely never walk, read, speak, let alone dance, play soccer or ride a bike. She requires 24-hour-a-day care.
Pénélope was stillborn and then resuscitated. A lack of oxygen during her birth has left her with severe spastic quadriplegia cerebral palsy.
Ms. Gavrel looks at her sadly and says, “It’s been so hard to learn to love her, and it’s only with love for her that I am able to admit I cannot care for her.”
With this realization arrived another.
In order to get round-the-clock supervision for her daughter in a specialized group home, Ms. Gavrel and her husband, Adrian McKeague, discovered they must pay out of pocket — from $90 a day to as much as $450 for a group home — or else legally abandon her to the Children’s Aid Society and make her a ward of the state.
Husband and wife have placed their daughter in temporary CAS custody in a group home on the outskirts of Ottawa. They have until July 31 to decide if they want to relinquish custodial rights permanently to ensure Pénélope gets constant care.
At that time, they’ll have to turn over their daughter’s health card and report to the CAS when they want to visit Pénélope or take her home for visits. Technically, they’ll lose the right to make medical and care decisions on their daughter’s behalf.
“I woke up crying the other night. Tears running down my face,” says Ms. Gavrel, 29, rocking her daughter. “I can’t believe I have to give her up to someone else and declare I’m not capable of looking after my child.”
Ms. Gavrel is trying desperately to hold on to her parental rights while ensuring her daughter gets 24-hour supervision.
There was a time the Ontario government would have been on her side. Four years ago, Ontario’s Minister of Children and Youth Services promised to help parents obtain services for their severely disabled children without giving up rights. “Parents, in the year 2005, in one of the richest countries in the world, should not be giving up their children,” said Marie Bountrogianni.
The minister was reacting to a scathing report by Ontario Ombudsman André Marin that revealed parents of the severely disabled were abandoning them to Children’s Aid Societies to secure care they otherwise could not afford.
Ms. Bountrogianni promised the government would pour millions into helping children with severe special needs. It began to return custody while leaving the children in long-term, government-funded institutional care.
But Pénélope’s case reveals that parents are still being asked to give up their children in order to get care. Both Mr. Marin and the province’s child advocate told the Citizen that their offices have received similar complaints in the past few months.
The Minister of Children and Youth Services today, Deb Matthews, says all Children’s Aid Societies have been told not to take disabled children into care unless there is a protection issue. But Ms. Matthews also said that a group home is not always the best place for a severely disabled child. She said the government is working very hard to help disabled children remain at home.
Where is Pénélope’s place?
– – –
March 27, 2008, is the last simple day Ms. Gavrel remembers. The day was cold and blustery, with snow piled as high as some people’s roofs. Inside, she was fat and happy and two days’ overdue, sitting on the couch watching her toddler, Mathéo, play. Her husband, Adrian, a 36-year-old carpenter, cleaned up supper dishes.
The family had just finished homemade fries and burgers — the same meal Ms. Gavrel prepared two years earlier when she was four days overdue with Mathéo. Ms. Gavrel wondered if the same meal, or its memory, might induce the birth of her second child.
She didn’t have long to wonder. Around 6:30 p.m., she felt a rush of warmth as her water broke. In the bathroom, she noticed brown matter in the amniotic fluid. It didn’t seem right.
The couple had planned for another home birth. Mr. McKeague called their midwife. She said it was probably meconium — the baby’s first feces — in the amniotic fluid. She advised them to get to the hospital as soon as possible.
Ms. Gavrel was experiencing immense pressure on her bladder. On her next trip to the bathroom, she noticed the umbilical cord protruding from her vagina. She started to panic.
“I am thinking the baby is coming,” she recalls. “But I am not thinking this means anything worse.”
Mr. McKeague again spoke to the midwife, who told him his wife was experiencing an umbilical cord prolapse, a rare complication in which the cord precedes the baby’s exit from the uterus. The baby puts pressure on the cord, putting it in severe jeopardy by cutting off the supply of oxygen and blood.
They needed an ambulance. An emergency dispatcher advised him to get his wife down on her hands and knees and help lower her head to relieve pressure on the umbilical cord and, they hoped, get oxygen flowing to the baby’s brain.
Weeks later, Ms. Gavrel would ask herself what she would have done had she known the risks of cord prolapse. Would she have called an ambulance? Or would she have let nature take its course and allow her baby to die? But on that night, at the end of that last simple day, she was just worried about having a C-section.
Within five minutes of calling an ambulance, a paramedic visiting friends nearby was at their door. He felt for a pulse in the protruding umbilical cord but could find none. The unborn baby was dead or dying. He put his hand inside Ms. Gavrel and lifted the baby’s head off the cord. He detected a weak pulse. Oxygen was again flowing to the unborn baby.
Ms. Gavrel was lifted — on her hands and knees — onto a gurney for the ride to the Civic campus of the Ottawa Hospital. The paramedic’s hand was still inside of her holding up her unborn baby’s head as they raced down the 417. Within 30 minutes of that first call to the ambulance, Ms. Gavrel was wheeled into the emergency ward.
She remembers having her clothes cut off, her jewelry removed, and emergency staff telling her they were about to get the baby out. When Ms. Gavrel awoke 90 minutes later, her husband was at her side. He’d been crying.
“Is the baby, OK?” she asked.
– – –
At 7:45 p.m., Pénélope McKeague was born dead.
The limp, grey infant was cut from her mother. She was not breathing. She had no heartbeat. During the next crucial minutes, emergency room staff used CPR to try to save the baby’s life. At a little after 7:48, her heart began to beat.
At 7:59, she gasped for breath.
Afterward, Mr. McKeague was taken to see his daughter. She looked tiny and perfect in the incubator. He spent most of the night sleeping beside her wondering what her future held. “She was born with poop in her lungs and a partially collapsed lung. Oxygen was cut off her to brain. Her breathing stopped and started. Still, doctors gave us positive signs that she would be OK. We were living on hope in the hospital.”
Only the doctor who resuscitated Pénélope said she was going to be “severely brain damaged.” The other doctors acknowledged there would be some damage but encouraged them to be positive. Brains can adapt and compensate.
The severity of Pénélope’s health problems emerged gradually over two months in hospital. At three weeks, she stopped taking a bottle and so had to be fed through a tube in her nose. Doctors said she would eventually need a feeding tube implanted in her abdomen.
Everything bothered Pénélope: Lights, touch, sound. She cried constantly. An MRI at the Children’s Hospital of Eastern Ontario revealed the motor parts of her brain were damaged badly. Pénélope’s cerebral palsy would be severe.
Her parents wondered why she had been resuscitated. They tried to calculate how long she had been without oxygen. But it was crazy making.
Was it from the time Ms. Gavrel first saw the umbilical cord? Was she without oxygen until the first paramedic arrived?
Months later, the couple met with Civic doctors to ask why they had saved their daughter. They learned that hospital procedure dictates that babies be revived if their hearts have not been stopped for longer than 10 minutes. After that benchmark, the chances of severe disability increase. According to her parents’ math, Pénélope had been on the cusp.
Hospital social workers reassured the parents that they’d be able to integrate their daughter into their busy life. They could take her for stroller rides and to the mall and the park and playgroups. If they struggled, government support would help with nursing and occupational therapy.
Ms. Gavrel holds a degree in sociology and childhood studies from Roehampton University in Surrey, England. She is a family support worker at the Vanier Community Service Centre. She studies infant massage. She assumed that with her skills and support, she could do it.
Pénélope, at two months old, was released from hospital. “We finally had her to ourselves, and she was crying and crying, and we couldn’t get her to stop,” Mr. McKeague recalls. “Kris was saying, ‘I can’t do this. I can’t look after her.'”
– – –
At home, everything was hard. “Kris couldn’t nurture her or calm her. It was continual crying or screaming. Day and night.” Pénélope was given medication to ease her discomfort but it brought no relief. “We didn’t know if she was hungry or cold or tired,” says Mr. McKeague. “Nothing we did worked.”
Ms. Gavrel has her own challenges. Born without a fully formed hand, she struggled to get formula into the feeding machine and attach it to the tube in her daughter’s abdomen. Pénélope ingested air, which seemed to make her cry even more.
The couple began to bicker. “We were snapping and agitated and it was ridiculous,” Mr. McKeague recalls. They had little patience or time for Mathéo.
Ms. Gavrel spoke to mothers of severely disabled children whose marriages had collapsed. Studies show that happens in the majority of marriages where there is a disabled child. “Odds were that would happen to us,” she says. Those same mothers urged her to place Pénélope in a home.
Ms. Gavrel bristled at the thought — at first. She was devastated that she couldn’t cope. Adequate outside help was hard to come by. The family was allocated 15 hours a week of home care. Nurses could not calm their daughter, nor were they available in the middle of the night when help was needed most.
The couple began to wonder if they were meeting their daughter’s needs, which were constant. Under the advice of social workers, they applied for help with expenses such as diapers and formula and medicine. They sought funds to help cover more home care.
– – – o matter how Ms. Gavrel divided the government assistance, it was only a fraction of what was required. Her only option would be to quit her job and become her daughter’s full-time nurse. But even that wouldn’t cover the middle of the night. Ms. Gavrel believed there had to be more support. “When someone has an elderly parent, someone with Alzheimer’s, no one expects them to drop out of society to care for them. Why with a disabled child must you do that?”
They wanted to be parents, not nurses. “We were doing an awful job at both,” says Adrian McKeague. “We wanted to be able to love her, not resent her. We wanted to find her the best of care.”
When Pénélope was three months old, they began to look for a home that specialized in caring for severely disabled children.
“I felt like a complete failure, to tell you the truth,” says Ms. Gavrel, who was exhausted and ineffective and failing. “I also worried I wanted to do this because I was not attached to her, because I couldn’t love her. It’s awfully hard to feel love when there is no rest, no help. I knew I had to find a way to love her, so I knew why I was really seeking help.”
They found a place on the outskirts of Ottawa that would provide 24-hour care, as well as expertise. The couple say they were advised by the home’s operator, and later the CAS, that to get Pénélope a bed they had to seek a “temporary custody” order that would eventually lead to relinquishing parental rights.
It was a devastating blow.
“She already had the worst birth imaginable. She was stillborn. And now to get proper care we have to give her away?” asks Ms. Gavrel. “That’s like another death. This is just a horrific situation. There is a huge stigma to saying you can’t care for your child. I am a decent person and a good mother, but in the eyes of society I won’t be.”
– – –
In the early 1980s, the provincial government passed legislation to support children whose special needs were greater than their parents could meet. Under voluntary agreements, Children’s Aid Societies assumed care and made public funding available without necessarily requiring parents to give up “custody” of their children.
In 1997, for reasons that are not clear, the Progressive Conservative government stopped using Special Needs Agreements. In order to get care, desperate parents started to relinquish custody to the CAS.
One mother, Anne Larcade, brought a lawsuit against the Ontario government in 2001 alleging it failed to meet its legal obligation to provide services for severely disabled children. To get the province to pay for treatment, Ms. Larcade had been forced to legally abandon her son, Alexandre, who suffers from brain damage and a degenerative neurological condition.
Ms. Larcade was the lead plaintiff for dozens of families in a class action lawsuit. In 2006, the Ontario Court of Appeal ruled unanimously that the class action could not go forward. Mr. Justice Robert Sharpe wrote, “(The government’s) priorities should be based on the general public interest, not on the interests of particular individuals, however difficult and sympathetic their circumstances may be.”
Ms. Larcade managed to retain custody of her son, who now lives in a group home. Many other families did not fair so well.
In a 2005 report entitled Between A Rock And A Hard Place, Ombudsman Marin uncovered 113 cases of severely disabled children who were wards of the state, primarily to get round-the-clock care in group homes. He found 196 other families on waiting lists, many of them on the verge of losing custody.
Mr. Marin said that these children were not considered to be entitled to residential care unless they were in the custody of the state. “It forces mothers and fathers of children with special needs to declare falsely that they have abandoned their children. It is a heart rendering and painful process.” He blamed “bureaucracy, technicality and entrenched position.”
The CAS is bound by law to find services for children in its care, which means it has access to more services and resources than parents who keep custody but can’t afford a treatment facility.
“It rings hollow to tell parents whose child is already being funded by the child welfare system that the same government cannot afford to fund them through the community services sector,” Mr. Marin said at the time.
Since his report, the government returned custody of dozens of children to their parents while in many cases allowing them to remain in ministry-funded long term care. The government did not, however, return to entering into Special Needs Agreements with parents.
The government also increased its yearly support for children with severe special needs to $68 million from $28 million. This money has been used to make residential care available for severely disabled children but also helps parents care for their children at home.
When contacted about Pénélope’s case, the government wouldn’t comment directly but said it has told the CAS that children should not be brought into CAS care unless there is a protection issue.
– – – o protection issue is apparent. The social worker’s report from when Pénélope was first placed in temporary custody describes a “wonderful relationship” with her parents, who visited and called frequently and who are “very committed to her well-being and quality of life.”
The report also said that her parents sought permanent placement when it “became apparent that Pénélope’s extraordinary care made it impossible for her to remain in her parental home.”
Ms. Gavrel and Mr. McKeague have written their MPP, Jim Watson, Premier Dalton McGuinty and Ms. Matthews, Minister of Children and Youth Services, asking for support in their fight to keep their custodial rights.
Ms. Matthews would not comment on this case. “Every case is different right … but there are medical decisions that are made to determine whether the child really needs residential care or whether they can be cared for at home.”
She said her ministry is working “with the family to bring those services that the family needs so the child can live at home.”
Ms. Matthews acknowledged the stress and strain of caring for a severely disabled child. “That is why we are trying to build up community support for families with things like respite. Some families tell me that they just look forward to that one weekend a month where they can have what they call a more ordinary, normal life.”
Ms. Gavrel believes that the reason she has had to give up temporary custody, and eventually permanent custody, is because the government thinks she should care for Pénélope at home. “They don’t want to make this easy on us,” says Ms. Gavrel, Otherwise, she believes the government would extend long-term support that would also allow her to maintain custodial rights of her daughter.
But Ms. Gavrel says what is available to her family will ultimately destroy it, and it won’t be good for Pénélope. “Somehow with 15 hours of help a week and a few weekends of respite, it’s all supposed to be OK.”
– – –
With heavy but hopeful hearts, Pénélope’s parents decided to place her in the group home. She is the youngest of six residents, all whom require 24-hour care.
During their first visit, Ms. Gavrel and Mr. McKeague were overwhelmed by the attention to detail: low counters, wheelchair ramps, bright sunny windows. A huge garden. Laughter.
“We found this incredible feeling of love for the children. It’s a home, not an institution,” Ms. Gavrel says. “We weren’t used to seeing kids so disabled, but they seemed content.”
In the car after their tour, the couple agreed it was a place where their daughter could receive constant care, perhaps even a quality of life.
Since Pénélope went to live there last summer, she smiles and even likes to be held. On New Year’s Day, when her parents went to visit, she giggled. “It was tiny, but it was the greatest thing,” says Ms. Gavrel.
“We can finally see her being happy,” she adds. “But we don’t want to give her up to the government and say she is not our daughter. It’s not true. And it’s not fair.”