Below are several vignettes that have been created to help medical home providers learn the signs of Fetal Alcohol Syndrome Disorders (FASDs) and develop individualized care plans for children with an FASD. A suggested script is also provided to assist with addressing families of a child diagnosed with an FASD.
Michael is a 6-month-old seeing you for the first time for a well-child visit. He was born at term weighing 5 lb 6 oz (2,440 grams). His birth mother has a history of drug and alcohol abuse and had very little prenatal care. He was recently placed with a foster family because of failure to thrive and his birth mother’s ongoing substance abuse. Foster parents report that he sometimes gasps during feeds and has not established a sleep pattern. Developmental surveillance shows delays in all domains. Measurements in your clinic today show length at the 10th percentile, weight at the 5th, and head circumference at the 3rd.
Signs of an FASD
According to the algorithm, Michael has risk factors (small for gestational age, foster placement, and suspected prenatal alcohol exposure) and signs of FASD (ongoing growth impairment, developmental delays). He also has central nervous system abnormalities (developmental delay, microcephaly).
In addition to his usual well-child care:
- Gather any available detailed information from the birth or prenatal records, social worker, or birth mother (if she is available) regarding prenatal alcohol exposure, including amount consumed and timing during pregnancy.
- Look for the cardinal features of FAS (short palpebral fissures, smooth philtrum, and thin upper lip).
- Examine for associated congenital anomalies (especially of the heart and palate).
- If history and exam findings are concerning, perform (or refer for) a more specific diagnostic evaluation, including measurement of the palpebral fissure lengths and lip/philtrum assessment using one of the published lip/philtrum guides.
- Evaluate for feeding problems.
- Document findings on the FASD Patient Checklist for Pediatric Medical Home Providers for quick future reference.
- If an FASD diagnosis is confirmed, provide parents and social worker information on resources available through the AAP and Centers for Disease Control and Prevention (CDC) Web sites, and the National Organization on Fetal Alcohol Syndrome.
- Referral to the Birth to 3 Program, and other local resources as needed; a “team care” approach including the birth parent(s), foster parent(s), social worker, pediatrician, and specialists is ideal.
- Document contact information for these care providers on the FASD Patient Checklist for Pediatric Medical Home Providers for quick future reference.
- Ongoing care will include coordination of needed/available services; monitoring of growth, development, and behavior; nutritional management; and anticipatory guidance.
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Michael’s diagnosis of FAS was confirmed at 6 months of age and he was adopted by his original foster family. He is now 4 years old and is enrolled in an Early Childhood/Head Start Program. His parents and program staff report increasingly challenging behaviors. They describe him as hyperactive and impulsive; he seems eager to please others but unable to follow rules, and has trouble making friends. His development continues to be delayed but he is making slow progress. His height, weight, and head circumference remain below the 10th percentiles although with improved nutrition his weight is now appropriate for his height.
Michael is showing some of the behavioral problems that are common among children with FAS and can create substantial problems over time socially, academically, and ultimately in general functional independence as an adult. Evidence-based programs and other resources are now available to help manage these, and taking advantage of these in early childhood affords the greatest chance of success.
- Refer to a developmental behavioral specialist and/or behavioral psychologist.
- Referral to a family therapist, ideally one familiar with issues of particular relevance to children with FASDs.
- Coordinate care according to recommendations provided by behavior specialists and incorporating environmental, therapeutic and, if needed, pharmacologic approaches to facilitate consistency in the management of these issues at home, in school, and in the community.
- Document contact information for these new care providers, interventions, and outcomes on the FASD Patient Checklist for Pediatric Medical Home Providers for quick future reference.
- Provide parents with additional resources.
Angela is a healthy 17-year-old girl seeing you for a sports physical. On routine health screening she reports occasional alcohol use with her friends and boyfriend. She is also sexually active; she is taking oral contraceptives but admits missing a dose now and then.
Angela is reporting activity that is not only unhealthy for her but also creates a risk that she will have an alcohol-exposed pregnancy.
Education, counseling, and brief intervention for her drinking and sexual behavior should be augmented with information regarding the risks associated with an alcohol-exposed pregnancy, including an overview
Daniel is a 3-year-old brought in by his mother who is concerned that he is hyperactive and reports that the child care center is asking for medication to help control his behavior. He has been healthy and met most of his early developmental milestones, but because of his behavior he was evaluated by the Early Childhood Program. They agreed his behavior was atypical but he did not meet criteria to qualify for services. A medical evaluation was recommended. His growth chart shows that he is small for his family, with heights and weights just below the 10th percentiles. On exam you also notice his smooth philtrum and thin upper lip and wonder if he might have one of the diagnoses that fall under the FASD umbrella.
Daniel’s growth pattern and behavior and your initial impression of his facial features warrants further investigation. You are concerned about offending his mother by asking about her use of alcohol during the pregnancy but recognize that this information is valuable in order to decide on steps for his further evaluation.
for addressing families of a child diagnosed with an FASD.
Provider: Often it can be helpful to figure out what might be causing behavior problems. Sometimes we can’t find a cause, but when we can, it can help point us in the right direction in terms of treatment. Daniel is adorable, but I’m noticing today that he is just a bit on the small side and has a couple of minor physical findings which are not problems themselves but may give us some clues to what’s going on. When we see this combination of things in a child with challenging behaviors, we sometimes think about genetic causes. We also think about things that might have happened during the pregnancy. I’ve asked you in the past about the pregnancy with Daniel, but looking back on it now, was there anything that happened to you or that you have wondered about as a possible problem?
Parent: Not that I can think of.
Provider: Anything you were exposed to?
Parent: I don’t think so.
Provider: Well, one thing we always have to think about is alcohol use – tell me about your use of alcohol while you were pregnant.
Parent: I had a drinking problem in those days, but I’m sober now for 2 years.
Provider: That’s fantastic! Congratulations! But, to me that sounds like this might have been going on while you were pregnant.
Parent: Yeah, but I cut way back as soon as I found out I was carrying him.
Provider: That’s really important – tell me more about that. How far along were you then?
Parent: Wait a minute – are you saying you think my drinking caused Daniel’s problems?
Provider: I’m saying it’s important to try to find the cause of his problems. This is not about blaming you – you’re doing a great job taking care of him, and obviously you have accomplished a great thing by getting control over your drinking and staying sober. Those are very important things for Daniel’s future and for yours. What we’re trying to do today is find the best way to help Daniel, and I know that’s what you want, too. Part of that is getting a better understanding of what might have caused his problems. I need your help in order to do that.
Parent: But I couldn’t help it – I didn’t know I was pregnant until I was 12 weeks.
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