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Expanding the Neighborhood: Providing a Medical Home for Children with Fetal Alcohol Exposure

Renee Turchi, MD, MPH, FAAP
April 13, 2018


The father had tears in his eyes as he described giving his partner, who was battling addiction, alcohol to drink while she was pregnant with their son, George. He hoped it would be enough to convince her not to leave in search of drugs and live on the streets.

 

“I figured the beers were better than her shooting up heroin or smoking K-9,” he said, referring to forms of opiates she craved. “At least she would be home, and I could make sure she was eating too. I never thought alcohol was bad for the baby.”

 

Unfortunately, George’s mother passed away from a drug overdose when he was 3 years old. His father brought him to our fetal alcohol spectrum disorders (FASD) diagnostic and treatment center when he was 8 because his attention-deficit hyperactivity disorder was not getting better. He was struggling in school.

 

We diagnosed George with an FASD and transitioned him into the Center for Children and Youth for Special Health Care Needs for his primary care medical home. This helped his father navigate the educational and medical systems while getting the emotional support he needed.

With the many lasting ways fetal alcohol exposure can affect children, Dr. @ReneeTurchi writes in #AAPvoices, early access to treatment, resources, and supportive, integrated care can make a lifetime of difference. #AlcoholAwarenessMonth

There is no cure for FASDs, but evidence-based treatment options and a variety of resources are available that can make a significant difference in outcomes for affected children and youth. Providing a primary care medical home for children with an FASD helps patients and families manage care integration, continuity and family centered care. Supporting patients and families with environmental modifications at home and school, parenting strategies, educational and therapeutic interventions can go a long way toward helping children optimize their potential.

 

The earlier families who are affected by fetal alcohol exposure can access treatment, resources, and supportive, integrated care, the better.  That’s why early screening and diagnosis of FASDs in children is so important. Ideally, primary care providers should screen all patients for prenatal alcohol exposure, both at newborn visits and perhaps again later. Sometimes, asking parents more than once is helpful as they may not disclose alcohol or drug uses on their first visit.

 

When prenatal alcohol exposure is disclosed, it’s important to recognize the emotional support biological families need. Linking with organizations such as the National Organization on Fetal Alcohol Syndrome or your state’s Family to Family Health Information system can help with peer-to-peer support for families. Adoptive parents need support as well, as FASD is a lifelong diagnosis and families need assistance in knowing where to go and how to advocate for their children dealing with the effects of fetal alcohol exposure. The American Academy of Pediatrics 2015 Fetal Alcohol Spectrum Disorders clinical report offers a wealth of information for providers, including diagnostic criteria for a child with an FASD and tools to assist pediatricians with its management, and an algorithm that can support pediatricians in practice. The AAP also developed the FASD Toolkit, a one-stop clinical resource, compiling tools that range from clinical decision support to communication aids as well as practice management guides that support quality care in the medical home.


"One in 10 pregnant women in the United States report drinking alcohol and about 1 in 33 report binge drinking (having 4 or more drinks at one time) in the past 30 days. Studies suggest the rate of fetal alcohol spectrum disorders is as high as 24 to 48 per 1,000 children, approaching that of other conditions such as autism spectrum disorder.”

As our country tackles the devastating opioid epidemic, we should remember alcohol exposure warrants the same level of awareness and fervor. One in 10 pregnant women in the United States report drinking alcohol and about 1 in 33 report binge drinking (having 4 or more drinks at one time) in the past 30 days. Studies suggest the rate of fetal alcohol spectrum disorders is as high as 24 to 48 per 1,000 children, approaching that of other conditions such as autism spectrum disorder. As I say in our medical home diagnostic and treatment program for FASD, the bad news is that business is good.

 

But there’s good news, too. As a profession, medicine is getting better at recognizing fetal alcohol syndrome disorders and helping families affected by them.  I first learned about Fetal Alcohol Syndrome (FAS) and it associated symptomology as a pediatrics trainee in the late ‘90s. I distinctly remember sitting in a conference when I first heard the term fetal alcohol spectrum disorders (FASD). Instinctively, I started running the list of patients in my head that I may have seen over the years that likely fit the criteria for FASD that I missed because I was not aware of the difference between FAS and FASD and the other terms associated with alcohol exposure.

 

We now know there is no safe amount of alcohol during pregnancy. We also know more about the many distinct but nuanced ways exposure before birth can affect children and families for a lifetime.

 

Along with promptly diagnosing and helping families access care and support for fetal alcohol disorders, one of the most important things we can do is to help prevent them from the start. This should involve consistently encouraging young women be as healthy as they can be throughout their lives. The same is true for young men, because fathers also have a voice in caring for children and can support mothers before, during, and after pregnancy, and can play a role in the prevention of FASD.

 

A fetal alcohol disorders syndrome diagnosis in pediatrics is 100 percent preventable--one that we all can work together to avoid.


The views expressed in this article are those of the authors, and not necessarily those of the American Academy of Pediatrics. 
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​​​Ab​out the ​​Author


Renee Turchi, MD, MPH, FAAP, is a member of AAP’s Council on Children with Disabilities and its Fetal Alcohol Syndrome Disorders Champions Network.  In addition, she serves on the academy’s Section on Administration and Practice Management. Dr. Turchi is the Section Chief of General Pediatrics and Medical Director of the Center for Children and Youth with Special Health Care Needs (CYSHCN) at St. Christopher’s Hospital for Children in Philadelphia. At St. Christopher, she also oversees a primary care practice dedicated to CYSHCN, including an FASD/NICU primary care follow up program and grants. Her academic appointments include serving as Associate Professor at Drexel University’s School of Public Health (Department of Community, Health and Prevention) and its College of Medicine (Department of Pediatrics).  She is the Medical Director of the Pennsylvania Medical Home Program and transition program, a statewide program for pediatric and family practices across Pennsylvania funded by the Pennsylvania Department of Health and the Maternal Child Health Bureau (www.pamedicalhome.org). Dr. Turchi’s research and clinical work around care coordination, medical home, and children and youth with special health care needs, have been presented and published in multiple national forums.


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