allison hanes: a hand extended to grieving families after perinatal loss
quebec's first perinatal bereavement awareness day is an important milestone, but there's much left to be done in supporting shattered families.
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when parliamentarians rose in the national assembly last thursday and lowered their heads for a minute of silence to honour the thousands of quebec babies who die before or after birth every year, along with their grieving families, it was a major milestone on a long journey.
this is the first time quebec is officially marking perinatal bereavement awareness day on oct. 15. catherine’s law, proclaiming the occasion, was unanimously adopted in february. (elsewhere in canada it’s called pregnancy and infant loss remembrance day, and has been marked for several years.)
the moment of reflection by elected officials was preceded by speeches from members of all parties. several parents whose babies have died and who have spent years fighting for more support looked on from the public galleries.
the remembrance was also preceded by a motion not only voicing sympathy, but pledging to study extending the benefits of quebec’s parental insurance program to financially help families dealing with loss as they recover. the motion was co-sponsored by the minister of employment. and it was again unanimously adopted by the national assembly.
for désirée mcgraw, the liberal mna for notre-dame-de-grâce, these were important steps toward breaking the stigma that has long surrounded pregnancy and infant loss, as well as helping the thousands of families who experience this kind of pain.
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“let’s take a moment and appreciate that actually this is about recognition, this is about raising awareness, this is about honouring those babies — i call them butterfly babies — but also the parents and the families, because there are also siblings that are impacted,” mcgraw said. “i think when you have the national assembly rise across party lines to say this matters, to take a moment, a moment of reflection, a moment of silence, i do think — i hope — that it sends a very strong signal to those families who feel alone and isolated and maybe to society in general that even though, yes, this kind of loss, especially miscarriage, is unfortunately common, it doesn’t mean that it doesn’t matter. it matters, it’s real and it has a real impact on people’s lives.”
mcgraw introduced a bill earlier this year in memory of her own daughter, who would have been eight years old if she had not died shortly before birth. but it was inspired by grassroots initiatives and the experiences of many other parents in n.d.g. struggling after the death of a baby.
“for me and my family, this law is catherine’s law. but for the 23,000 quebecers who will also experience perinatal loss this year, it’s their law, in honour of their little ones, lost forever,” she said.
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there will be several events tuesday to mark quebec’s first perinatal bereavement awareness day.
mcgraw plans to release video testimonials from families whose children have died, recorded while they were at the national assembly last week to witness the passage of the motion and attend a press conference. she hopes people and organizations will share the accounts to help break the taboos that leave grief-stricken families feeling invisible.
tuesday evening, there will be a screening of a new documentary in gatineau on how miscarriage and pregnancy loss are treated in the health system and society as a whole.
for the second year in a row, the tower of the olympic stadium will be illuminated blue as a reminder of all the babies who didn’t survive.
anie grondin, president of the association parents orphelins, helped found the support group for “orphaned” mothers and fathers after her daughter was stillborn in 2008. she said a show of solidarity can go a long way in helping families experiencing such enormous pain feel seen.
“it’s very important that people are aware because this is a grief that i know from experience is very complex, that can be very difficult, but that is largely unknown to the general public. and with its lack of awareness, the general public can fail to understand or underestimate that difficulty,” she said. “i myself have been through it and the lack of support from your wider entourage — not the people closest to you, but your wider entourage like work colleagues, neighbours, friends.”
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mcgraw will also go to the royal victoria hospital at the mcgill university health centre tuesday to see the cuddlecots she and other grieving mothers helped raise funds to purchase several years ago. the refrigerated bassinets allow families to spend more precious time with their dead children saying hello and goodbye. their campaign was a quebec first that has since spread to other hospitals.
annick robinson, another of the fundraisers, will also be at the royal vic to discuss how the beds are changing care for families and give feedback to medical staff about what it’s like to be a patient grappling with the shock. her son jacob died over the thanksgiving weekend of 2010 after being born prematurely at 20 weeks.
“i returned home the morning of thanksgiving in 2010 with empty hands, empty arms and a broken heart,” robinson said during the press conference at the national assembly thursday. “anything you can imagine about this kind of grief, the reality is worse. and i realized the extent to which there was a lack of resources, a lack of support, and total silence awaits you.”
ensuring quality care and a continuum of services is one thing all those who advocate around perinatal loss say needs improvement. many say it can be hit and miss, depending on the knowledge and sensitivity of individual care providers.
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addressing the national assembly, social services minister lionel carmant, who practised medicine before entering politics, noted that the quebec government has recently invested in training on infant and pregnancy loss for health professionals as well as organizations developing support programs.
“in my former life (as a doctor), i encountered many people who went through these difficult ordeals. it is difficult to comprehend the pain and the magnitude of the loss of a child when we haven’t lived through it ourselves,” he said. “it’s also important to understand that perinatal grief can affect families who have been through a miscarriage at any point during a pregnancy. all families need support and accompaniment to recover from such a loss.”
québec solidaire mna guillaume cliche-rivard said many families face barriers to getting or paying for psychological counselling to heal from the shock of an infant’s death.
“we also have to make sure mental health services are available and adapted to these realities for everyone,” he said in his speech on the motion. “we often say it takes a village to raise a child. but the village also has to be there when a family goes through this kind of tragedy that we all hope to avoid.”
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parti québécois mna joël arseneau said adjusting the parental insurance plan could be one way to help, since mothers can currently collect some of their maternity benefits depending on when their child dies, but fathers receive very little.
“we certainly have to do more to reinforce the fiscal and social safety nets that these families rely on, so they can mourn without the added burden of financial stress,” arseneau said in the salon rouge.
more research is also needed into reproductive health, especially the possible causes of miscarriage and fetal death, said mcgraw, who has endured a total of six pregnancy losses between six and 36 weeks.
the commemorative events are only the beginning of the work left to be done.
“when the law was passed, i was very clear that this was an important step, but it was a first step and there was a lot more to do beyond raising awareness,” mcgraw said. “raising awareness is super important, but we also need concrete actions.”
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