Philadelphia Medicine Winter-Spring 2021 - 20

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FEATURE continued
" So many things, you go to the doctor, you hear what your child
has, we often don't know why, " Turchi said. " We know how to treat
it. It's not attributed to someone's actions. That's one thing that is
really important in their diagnosis: not just that we are spending the
time, and we have the evidence to do it. It's that there's that sensitivity
because of the alcohol relationship. "

Trained in pediatrics
" I trained in pediatrics about 20 years ago, " Turchi said.
When she was training, Turchi learned about " a characteristic
face that children had, " she said. " You sort of saw the physical
manifestation of alcohol exposure. "
When she did her fellowship, Turchi became really interested in
children with medical complexities.
" I remember one day being at this talk about fetal alcohol spectrum
disorder, " she said. " I was really intrigued. There was a gentleman there
who gave the talk, his name was Dan Dubovsky (a social worker who
has an adoptive son with fetal alcohol syndrome): he's still a friend
and a mentor. Essentially what I was learning, what the research
was showing, is that, in fact, alcohol exposure really didn't always
manifest with physical symptoms, and it really causes brain damage. "

'We're not looking to make women
get tremendous guilt.'
- Dr. Renee Turchi
The Center for Children with Special Health Care Needs works
with children who have minimal evidence of effects and some that
have very significant physical and cognitive, or brain, manifestations,
" and everywhere in between, " Turchi said.
" I realized how many kids I had seen in my career that I hadn't
even entertained the diagnosis of an FASD because of just how my
lens of my training was so focused on certain physical things, " she
said. " And that really was a very central moment. "
Turchi began to become involved in learning more about the
disorder. Dubovsky shared with her a request for proposals from
the Substance Abuse Mental Health Service Agency, or SAMSA, a
federal agency, to evaluate and to develop capacity for diagnosing
and screening fetal alcohol spectrum disorders.
" I was really intrigued, " Turchi said. " Maybe this is something
that we can do and begin to layer this into our practice. "
The current primary care practice is in St. Christopher's Hospital
for Children in Philadelphia that is dedicated to being a medical
home for children with medical complexities.
" But we also have some boutique primary care offices, " she said.
" And that really launched our center within our larger practice, until
we developed the FASD Screening Diagnosis and Treatment Center. "
20 Philadelphia Medicine : Winter-Spring 2021

The Center works with parents who are concerned their child
might have FASD.
" We use an evidence-based approach through that training, and
we screen them, " Turchi said. " Then we do a diagnosis and then we
follow them over time to support them in this journey. "

Cost of the syndrome
According to the CDC, the lifetime cost for one individual with
FAS in 2002 was estimated to be $2 million. This is an average for
people with FAS and does not include data on people with other
FASDs. People with severe problems, such as profound intellectual
disability, have much higher costs. It is estimated that the cost to
the United States for FAS alone is over $4 billion annually.
The Center has specific goals to accomplish treatment.
" Our Center's mission is to provide evidence-based, family-centered
and patient-centered integrative care for children and families that
are at risk or have an FASD diagnosis and to follow them, if after a
diagnosis, through treatments and support, " she said.
This involves a lot of mentoring and education of the children
and the parents as to their roles in successful syndrome management.
The Center strives to " maximize the potential of the child, to
provide an integrative, supportive environment, with no judgment, "
Turchi said.
The practice also recognizes co-morbidities, including autism
or defiant disorder.
" For some of the kids, often attention deficit hyperactivity disorder
is one, " she said.
Others can have anxiety and depression.
" I've had some kids with fetal alcohol syndrome that I have
diagnosed with autism as well, a co-morbid condition, " Turchi said.
Can fetal alcohol spectrum disorders ever be eliminated?
" You're not ever really curing it, because it's affected the brain, "
Turchi said. " It's not like you are curing cancer. But if you don't
understand that it comes from fetal alcohol, some of these behavior
manifestations, where they are coming from, the supports and
interventions at home and at school often aren't great. And even
if they have attention deficit disorder, sometimes you don't always
treat it with a medication. "
For the patient, the syndrome lasts a lifetime.
" But I think the thing that's so important to us is we follow them
long-term, " Turchi said. " In my experience, for a lot of families, the
diagnosis is a big part.
" But it's often what follows after that that is even harder. Many
times, by the time the family gets to us, it's because they're desperate. I've had kids who have been kicked out of preschool. School's
unraveling. They're suspended a lot. There's a lot there, for them.
" I think it's that long-term effect, where we intervene with the

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