In addition to the frustrations her parents face with inadequate support from society, and the problem governments face in intervening without taking away rights, we must contemplate the impact cases like this have on other present and future adoptive and foster children.

Already, there are precious few of us willing to take on the parenting role for a special-needs child. For youngsters most in need of a parent’s love and the community’s nurturing embrace, it can only make things worse if potential adopters see how little help they will get, and how paralyzed government is in finding effective public policy for such troubled youth.

The name of the particular child in Simons’s column, and thus the names of her parents, cannot be published. (At least on that front, government has managed to keep the best interests of the troubled girl at the forefront.)

But what we know of her family’s situation is tragically familiar. The young woman is 16 years old, and has a number of behavioural issues that can be attributed in part to fetal alcohol spectrum disorder. Her birth mother had addiction problems; it is known she was neglected and abused by guardians prior to her adoption. She now has a history of running away from home, and of using alcohol and drugs.

Her parents need and have asked for more help from government. Currently, however, they are caught in an all-too-familiar Catch-22: they desperately hope to avoid a spiral down into crime or more serious medical con-sequences, but only after those things happen can the state contemplate more decisive intervention.

In 2006, the Alberta legislature gave health officials the legal tools to hold a youngster for five days in a secure detox centre, and the girl in the current case has had a few such stays. But government has no power to compel treatment, and in this case those efforts have failed. As indeed have more recent, longer sessions of court-ordered “secure services.”

It is difficult – well, make that impossible – to confidently say what should be done in the case of young people who either can’t or won’t adjust their behaviour to less destructive patterns. Even apart from the cost, open-ended institutionalization can never cure injuries incurred in vitro.

Clearly, the only long-term solution is more effective prevention of fetal injury, and of damaging care in the first years of life.

On a closer horizon, the logic that such children need care, and that prospective caregivers will be more forth-coming if they know that society won’t leave them hanging, demands that government and taxpayers worry less about the cost of acting, and more about the cost of failing to do so.

And it’s easy to understand why.

He, his wife, and their 14-year-old daughter moved to Alberta from the United Kingdom in 2009. The couple adopted their daughter when she was seven. They knew her biological mother was an addict with mental health issues. They knew their daughter had been neglected by her birth family, and abused in foster care. Still, they were confident they could help their little girl overcome her childhood traumas.

But within months of arriving in Canada, things started to go terribly wrong. Their daughter started seeing an adult boyfriend, an 18-year-old, whom the father suspected was a meth addict. She started drinking, using drugs, running away. Her family called police. They called child welfare. They consulted psychiatrists and counsellors.

According to court records, the teen was diagnosed with mood disorder, conduct disorder, reactive attachment disorder, fetal alcohol spectrum disorder, and borderline personality traits — an ominous list, which explained much, but solved little.

On three separate occasions, the girl was apprehended under provincial legislation known as the Protection of Children Abusing Drugs Act. A PChAD order allows minors between 12 and 17 to be held in a secure detox bed for up to five days at a time.

But while children in such custody are offered access to addictions treatment, the law doesn’t compel them to get treated. And although the province amended the act in 2009 to allow children to be held for up to 10 days, the amendment was never proclaimed — largely because the province doesn’t have enough secure beds to offer extended treatment. According to Alberta Health Services, there are 15 such youth detox beds across the province — and last year they served about 700 patients.

For this father’s daughter (because she cannot be identified under the terms of the Child, Youth, and Family Enhancement Act, I’ll call her Jane) repeated stints in this court-ordered detox proved futile.

Eventually, child welfare officials stepped in, and got a series of court orders to hold Jane in “secure services” — a system that provides more extensive and high-security treatment than a conventional group home. (In 2010-11, there were 224 children treated under the protocol.) In court documents, child welfare officials noted that Jane was “associating and residing with” known criminals and drug traffickers, and engaging in “high-risk behaviours.”

“(Jane’s) pattern is to remain manipulative and not engage in the treatment process and then AWOL as soon as she is in an open setting,” reads one court application to renew a secure services order.

According to Jane’s father, the girl was released from her last stint in treatment in August. His daughter, he says, moved back home for a few days, then ran away again. Her family now has only sporadic contact with her. Her father worries that she’s living with an older, adult boyfriend, whom he suspects may be physically abusing her.

Jane’s father has written to the prime minister, to the premier, to Human Services Minister Dave Hancock. He’s had opposition MLAs ask questions on his behalf in the legislature. He’s started a website to bring public attention to his plight.

For him, the issue is straightforward. His daughter is mentally ill and neurologically impaired. She’s 16 and an emancipated minor, but she’s still not a legal adult. Her behaviour puts her at risk. He wants her apprehended, placed in secure care, and compelled to undergo psychiatric treatment.

“Our daughter has mental health issues and there is no distinction between a teen who had gone off the rails for awhile and is likely to come back to reality, and a teen with mental health problems. They are all tarred with the same brush,” her father wrote in his recent letter to Prime Minister Stephen Harper. “Your government’s legislation is leaving vulnerable teens to the hands of sexual deviants, drug dealers and more.”

It’s easy to empathize with this father’s despair and feeling of helplessness.

But sadly, our overtaxed, under-resourced, mental health, child welfare, and justice systems aren’t well equipped to help a teenager like Jane. She isn’t psychotic or delusional or violent or acutely suicidal. Under Alberta’s mental health legislation, it would be difficult for Jane to meet the criteria for involuntary commitment as a formal mental patient. She hasn’t been charged with a serious enough offence to warrant extended criminal incarceration. And while child welfare staff could apply for more secure services orders, based on Jane’s history, and her age, it’s hard to know how effective they would be. Locking her up, in some way, would keep her safe. But that would violate her legal rights — and offer little guarantee that she’d emerge with her problems solved.

Our various “systems” don’t know what to do with older teens who display the typical symptoms of FASD — kids who have poor impulse control, poor decision-making skills, poor judgment, who lack the capacity to learn from their mistakes, kids scarred by abuse in utero. Not even responsible, caring adoptive parents can “love” these children better. Often, it’s not until they end up in the criminal justice system that they get any kind of sustained treatment.

At this point, I’m supposed to offer my solution to this problem. I wish I had one. I could say we need more resources for pediatric mental health services. I could say that we need our health care, child welfare, and court systems to do a better job of working together to serve young people who have both addiction and mental health issues. I could say we should offer families of kids with fetal alcohol spectrum disorder, including adoptive and foster parents, more supports to manage the immense responsibility they’ve shouldered. None of those things will bring Jane home safe. But they might help to keep the next Janes off our streets.

http://www.edmontonjournal.com/health/Plight+troubled+teen+highlights+lack+support+families/6039686/story.html

Melinda Beck on Lunch Break looks at the
latest in warnings for pregnant women on drinking
alcohol during their pregnancies.

In the sixth to 12th week of pregnancy, a fetus’s
bones, brain and central nervous system are
forming. Buds blossom into arms and legs, and
internal organs start to function. A face with
eyelids, lips and other features appears.

This is also the time when a mother’s alcohol
consumption poses the greatest risk of doing
lifelong physical damage to her baby, according
to a new study of nearly 1,000 women who drank at
least once in their pregnancies.

On average, the women drank a small fraction of a
drink a day. But some downed as many as 12 drinks
a day?well above the amount considered safe for
the women’s own health?and binged frequently.

For each drink consumed each day over the daily
average in the second half of the first
trimester, the women’s babies were 12% more
likely to have a small head circumference, 16%
more likely to have low birth weight and over 20%
more likely to have a very thin upper lip or lack
a vertical indentation between their noses and
lips. While seemingly minor, those
characteristics are typical of fetal alcohol
syndrome, or FAS, and frequently presage
cognitive and behavior problems later in life.

 A fetus in the seventh week of
pregnancy, above, is in the range of greatest risk from a mother’s drinking

Overall, the more the women drank, the more
likely their babies were to have such problems,
according to the study published last week in the
journal Alcoholism: Clinical and Experimental
Research. Some who averaged less than one drink a
day still had babies with some FAS characteristics.

“We found that there is no safe amount of alcohol
to drink during pregnancy,” says lead author
Haruna Sawada Feldman, a postdoctoral student at the University of . California, San Diego.

A few studies have found a drink or two a week
seemed to have little effect on babies. But most
of those relied on mothers’ recall after giving
birth, while the UC San Diego researchers
interviewed subjects throughout their pregnancies.

Fetal alcohol syndrome?an array of physical and
mental abnormalities including learning
disabilities, language delays, poor concentration
and low IQ?was first recognized in the early
1970s. Experts have never pinpointed how much
alcohol it takes to cause damage, so the U.S.
Surgeon General, the Centers for Disease Control
and Prevention and the March of Dimes all urge
women not to drink at all if they are or might become pregnant.

Some women drink anyway?in part because friends,
family members and even some obstetricians say an
occasional drink isn’t likely to cause harm.

“We know that alcohol crosses the placenta; we
know that it’s linked to mental and physical
problems; so why risk it?” says Tom Donaldson,
president of the National Organization for Fetal
Alcohol Syndrome, or NOFAS, a nonprofit advocacy group.

In government surveys, about 12% of pregnant
women in the U.S. report drinking some alcohol in
the past 30 days and about 2% report drinking
five or more drinks at a time. The CDC estimates
that of approximately four million U.S. infants
born each year, between 1,000 and 6,000 fit the
criteria for FAS. Experts think as many as 40,000
a year have some neurological or behavior issues
caused by prenatal alcohol exposure, a broader,
less well-defined range of conditions known as
fetal alcohol spectrum disorder, or FASD.

Why alcohol seemingly affects some unborn babies
but not others remains a mystery.

“There’s a huge amount that we still don’t know
about this disorder,” says Kenneth Lyons Jones,
one of the physicians who first recognized the
danger of alcohol in pregnancy when he and a
colleague noticed that eight children in a
Seattle clinic all had similar facial features
and developmental problems and discovered that
all had been born to alcoholic mothers.

Dr. Jones, now a professor of pediatrics at UC
San Diego and a co-author of the study,
speculates that genetic differences may at least
partly explain why some babies are more affected
than others. He and other researchers are also
investigating whether a mother’s health and
nutrition may play a role, studying pregnant
women in Ukraine where the incidence of FAS is high.

In the U.S., experts say most children who fit
the criteria for FAS or FASD never get a formal
diagnosis. Many of the cognitive and behavioral
problems are common in the general population and
some are subtle enough to go unrecognized.
Mothers who drank during pregnancy are often
reluctant to admit it and physicians are often
loath to voice suspicions, experts say. What’s
more, there are no blood tests or other
biomarkers to show alcohol exposure in the womb.

But the damage can last a lifetime.

Researchers at Emory University in Atlanta have
been following a group of alcohol-affected
children born between 1980 and 1986 into young
adulthood. (“In those days, mothers told us
everything,” says Claire Coles, a professor of
psychiatry at Emory and the project leader.)

Not all those whose mothers drank have suffered
physical or cognitive damage. One recently
graduated from Princeton University, says Dr.
Coles. But many have visual and spatial
difficulties and trouble encoding memories.
Functional MRI studies have found that
corresponding areas of their brains are abnormal.
Many also have trouble with math concepts,
starting around age 5. “You can get them to say
that 2 plus 2 equals 4, but they don’t know what that means,” says Dr. Coles.

She and others have designed learning programs
that address the specific needs FAS children
have?but she stresses that it’s important to
identify them early, when their brains are most
adaptable. Other experts agree. The American
Academy of Pediatrics plans to issue new
guidelines this year urging pediatricians to look
for signs of FAS and FASD in their young patients
and urge parents to seek help.

Admitting that their drinking may have caused
their children’s problems can be difficult for mothers, however.

“It takes a lot of courage to own this and tell
people, ‘Yes, I drank while I was pregnant,’”
says Kathy Mitchell, who had three children by
the time she was 20 years old in the 1970s and
drank wine with each pregnancy. Two of them are
healthy, but one daughter, now 37, has severe
FAS. Two other children died in infancy, which
Ms. Mitchell also attributes to her drinking.

Now a recovering alcoholic and spokeswoman for
NOFAS, Ms. Mitchell works with families who have
adopted FAS children, knowingly or unknowingly,
as well as birth mothers who are “stunned and
remorseful and full of guilt,” she says.

“No one intentionally sets out to harm her
children,” says Ms. Mitchell. “Most birth
families who receive the diagnosis don’t tell
anyone. But it’s not going to get prevented if we call it something else.”

According to a new study, having a drink during the first trimester qualifies as risky behaviour.

According to new research, drinking alcohol is most damaging to fetal
development during the first trimester, with the potential to lead to
physical deformities as well as behavioral and cognitive symptoms.

The latest study, published in the journal Alcoholism: Clinical &
Experimental Research, followed 992 women over a nearly 30 year
period, tracking their alcohol and substance intake every three
months while they were pregnant. As Alice Park of Time reports, every
drink pregnant mothers consumed between their 43rd and 84th days of
pregnancy added a 16 percent chance that their babies would be born
smaller than average. These infants were also more likely to incur
birth defects such as abnormally small heads and thin upper lips
typical of fetal alcohol syndrome.

It’s compelling, even frightening, evidence. But how much stock
should we place on a single study of 1,000 people?

In 2010, a more expansive survey done in the United Kingdom came to a
less harrowing conclusion. Following more than 18,500 children born
between 2000 and 2002, scientists found no evidence of harm from
having a couple of drinks a week during pregnancy. Said Fred
Bookstein, an applied statistician studying fetal alcohol spectrum
disorders at the University of Washington and the University of
Vienna, to Discovery News:

“It is no longer valid to argue that we don’t know enough about
low-dose drinking during pregnancy or that the known effects of binge
drinking may penetrate to low-dose drinkers somehow,” said Bookstein.
“There is no detectable risk associated with light or moderate
drinking during pregnancy.”

Get The Facts About Teen Pregnancy Prevention

So which is it? While everyone knows heavy boozing is bad for babies,
cultural attitudes vary when it comes to the occasional glass of
merlot. In the U.K., where a third of women report drinking at some
point during their pregnancy, official guidelines mandate that they
“should not drink more than 1 to 2 units of alcohol once or twice a
week and should not get drunk.” Meanwhile, here in the States,
pregnant women are often pressured to abstain completely, getting
turned away by liquor store clerks even when they’re not planning on drinking.

In the end, it comes down to personal choice. But for mothers-to-be
who might have imbibed before they found out they were pregnant,
there’s some comfort in knowing that a glass of wine probably isn’t
going to do lasting damage. Just don’t make a habit of it. As Dr.
Michael Katz, professor emeritus of pediatrics at Columbia
University, said to ABC News: “You can walk on a railroad track and
not be hit by a train, but that doesn’t mean it’s a safe thing to do.”

Justice system struggles to deal with fetal alcohol disorder

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