Aboriginal babies most at risk

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Sudden Infant Death Syndrome (SIDS) is not a topic a lot of people want to talk about, SAID Mary MacCormick who heads up a unique public education program aimed at preventing the tragedy. She has just finished training 10 facilitators at the Niagara Regional Native Centre to help spread the word about preventing SIDS.

When a baby dies, sometimes parents blame themselves and turn their grief inwards, or blame someone else in their family, but unfortunately that does nothing to prevent the next infant death.

MacCormick, who works for SIDS Canada, said SIDS claims two babies a week in Canada, and the main causes are believed to be "sleeping the baby on its tummy, over-heating and smoking."

Babies of teenage mothers also are more at risk.

On top of that, Aboriginal people have been found to have at least a five per cent greater risk of losing a child to SIDS, and that is why MacCormick says she is putting a push on getting as many young Aboriginal facilitators trained as possible in the STEPS program she runs, so they can share their knowledge about SIDS prevention in their own communities.

STEPS is an acronym for the four-hour Special Teen Education Program that was introduced in Ontario in 2001.

It covers the risk factors for SIDS and what parents can do to minimize that risk. Currently there is no definitive cause and no measure that will prevent all SIDS deaths.

The STEPS program was launched in Thunder Bay in September 2003 where, despite putting out more than 200 invitations to various kinds of organizations, "we had very little response. But we had five workers come out from a Native group there, and they have been fabulous," said MacCormick.

She is referring to Beenidigen, an organization that provides support to families that have lost babies and trains expectant mothers in how to reduce the risk of SIDS.

Beenidigen also runs a healthy baby and child program and a parenting group. As a result of MacCormick's contact with this group, 22 facilitators were trained in the Thunder Bay region to pass on the STEPS program to others.

One of the Beenidigen group took a particular interest in the STEPS training because "they had lost two or three babies in the last year in cradleboards," said MacCormick. "So they really wanted to look at whether or not they could help these families more.

"One of the girls brought in a cradleboard and we went over it and tried to develop a safer way (to use it). The baby can still sleep in the cradleboard, of course, but just to lower the strapping so the chest can move better and there is better air flow and that kind of thing. So we're actually working together to try to develop and keep the ethnic and heritage background without changing it too dramatically."

MacCormick said she does a personal follow-up with those she trains, and sometimes she goes with them to help them make their first presentation in their own communities.

She pointed out that not everyone who takes her training will do formal presentations of what they learn, "but they may tell five of their friends" what they know about preventing SIDS.

MacCormick, whose own 17-year-old daughter lost a baby to SIDS some years ago (her first grandchild) has made SIDS her special cause.

The original plan was just to train pregnant teens, said MacCormick, but she said they quickly learned that they had to work with communities and agencies as well. "Because teens go home and grandma may not know about 'back to sleep.'" She explained it is safer to put babies to sleep on their backs.

"So we need to train the grandmothers as much as we do the teenagers, because if a teen goes home and she puts the baby on its back and mom says 'What are you doing? I had six kids and they all slept on their tummies,' and flips the baby over . . . We have to train everyone if we want to see this program successful."

She shared some facts about SIDS with Birchbark.

Babies who are put to slep lying on their stomach are twice as likely to die of SIDS as babies put to sleep lying on their back. If, in addition to sleeping on its stomach, the baby has a teenage mother it has a five times higher risk again, according to MacCormick. And if the child is Aboriginal, "you add another five times. So if it's a teen mother and Aboriginal and the baby is sleeping on its tummy, you have about a 17 times greater risk of dying of SIDS. And if you add smoking into it, it brings it up again. And, of course, a lot of teens smoke."

Smoking during pregnancy, or around a young child-even outdoors-increases the risk even more, and the risk increases as the number of cigarettes smoked increases.

MacCormick said her own daughter was living at home when she lost her son "and we thought we were doing everything right." But she said women in their 40s and 50s, such as herself, who "had their children 20 years ago" won't know that a baby should sleep on its back. Before about 1990, mothers were told to sleep a baby on its side or on its stomach.

"Side sleep we discourage, because on the side it can actually topple onto their tummy, especially if the baby is a back sleeper. And say they go to the babysitters and the babysitter puts the baby on its side, and that baby moves around during sleep and topples onto its tummy, it now has a 20 times greater risk of dying of SIDS."

That's because the sleep position is an unaccustomed one, MacCormick explained. "And that's where we're finding that babies are dying quite frequently on the very first time they're placed on their tummy. They're just not accustomed to it."

MacCormick admitted the problem with risk reduction is that sleeping on the tummy, overheating and smoking are only risk factors.

"We probably don't know all the risk factors, because some babies will die on their back, in a smoke-free environment, where you think that everything was done just perfect... But we are reducing the risk, and if we can eve save one baby it's worth it.

Mary MacCormick said other risk factors are using a comforter instead of a blanket to cover a baby, as it may slip over the baby's head. She recommends comforters be used only for children age two and over. Another hazard is putting bumper pads in a baby's crib. MacCormick attributes the greater risk SIDS poses to Aboriginal babies relates to poverty on reserves and lack of a safe sleep environment. "Many of them are co-sleeping, and sometimes there's several children in bed with mom and dad, and it's dangerous. The overheating risk factor, the nutritional (inadequacy) and sometimes they don't go for their prenatal visit right away."

She knows a lot of communities are a long way from adequate prenatal care and isolation makes it hard to help mothers who lose their children to SIDS too. In some places, "we do peer support online, because there's no group there. That's why we started the discussion forums and the online chats. We hold those twice a month and we provide support to families that have lost a child to SIDS who may not be in an area where there's a chapter or a support group."

MacCormick also pointed out that even where there is a support group, the bereaved parents need to be close in age to get the most benefit from attending. "That's why it is so important to develop something for teens ... we go from 25 under.

"I have been pleasantly shocked to see how much support we're getting from the Aboriginal community... Every time we go out and do a STEPS program there are at least two Aboriginal workers in the audience."

For more information about SIDS or the STEPS program, go online at www.sidscanada.org or email Mary MacCormick at mmaccormick@cogego.ca.