Showing posts with label congenital heart disease. Show all posts
Showing posts with label congenital heart disease. Show all posts

Monday, August 17, 2015

Getting the Right Beat: How Do Children with Congenital Heart Disease Do in School?

By: Joann Schulte  DO, MPH; Editorial Board Member   

         You want to get to the heart of the matter when a neonate has a  murmur or cyanosis.   About 1% of US infants are born with congenital heart disease (CHD) and their lives after discharge can be complicated with follow-up care.  But what happens when such children start school?  How do they  compare to other children?
            A new study published this month in Pediatrics from Riehle-Colarusso et al. (doi: 10.1542/peds.2015-0259) explores that issue with an innovative linkage of three databases to provide a picture about how such children do when school starts.  (This last sentence is the punch line and you state it below—so would not state it here.)
            The authors, epidemiologists from the Centers for Diseases Control and a cardiologist from Emory University, used data from Georgia birth certificates, the Atlanta Congenital Defects Program (population-based surveillance of birth defects) and the Special Education Database of Metropolitan Atlanta to study 3,744 children with CHD.  They tracked a cohort of children born during a 22-year period (1982 to 2004) and compared them to a group of children without major birth defects.
            Only children with isolated CHD, not including children whose conditions was complicated by other genetic diseases or birth defects were included in the study..  The comparison group of 860,715 children was identified through Georgia birth certificates. 
            The authors followed the entire group of 864,459 children to determine if they required special education between 1992 and 2012, using the database that tracked receipt of such services.  The special education database covers nine public school districts in the five counties that make up the metro Atlanta area.  
            The results of this study indicate that 15% of the children with CHD had received special education service compared to 9% of those without birth defects. Compared to the children without birth defects, those with CHD had a higher prevalence of intellectual disability, sensory impairment, and significant developmental delay among other neurodevelopmental impairments..
              This study has implications for what kind of care and follow-up attention might be needed for children with CHD.   Since 2011, screening for congenital heart disease has been recommended through pulse oximetry screening after 24 hours of age and before discharge.  This study suggests that pediatricians taking care of children with congenital heart disease might do well to track the developmental progress of those children.  Early identification of children with special education needs can help their success in school.  Examining twenty-two years’ worth of data for a group of Atlanta children with and without CHD provides important information on neurodevelopmental outcomes that can benefit the entire pediatric population with congenital heart disease..

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Wednesday, May 13, 2015

So Just How Good is Screening for Critical Congenital Heart Defects?

By: Lewis First, MD, MS; Editor-in-Chief    

      It’s been four years since the US Secretary of Health and Human Services recommended universal screening of newborns for critical congenital heart defects (CCHD), but many health care professionals and parents continue to wonder just how many children would be picked up asymptomatically as well as how many might be missed.   
     This week, Ailes et al. (doi:10.1542/peds.2014-3662) share their simulation model that estimates the number of infants detected and missed by newborn screening with pulse oximetry.  The authors further divided their estimates in terms of 7 primary cyanotic lesions and 5 secondary “targets” and applied their model to nonsyndromic children.  Interestingly enough, while pulse oximetry would be helpful in detecting a substantive number of nonsyndromic children with CCHD in the US (about 900 babies per year), a similar number would be missed especially in terms of the secondary targets. So what does this mean?  Should we stop screening?   
      The authors don’t suggest that, but do continue to encourage primary care clinicians to continue to perform careful cardiovascular exams during the first year of life, especially if the baby is demonstrating other signs or symptoms suggestive of poor growth requiring further cardiac evaluation.  Have you had patients diagnosed with heart disease in the setting of a negative newborn screen?  Have you had patients diagnosed by the screen who might otherwise have been missed?  Would those missed have been diagnosed by prenatal imaging?   
     The authors share their thoughts on the significance of their findings in their simulation model, but we would love to hear from you in terms of your experience in real life.  Take heart and share your thoughts via an e-letter, or via a posting below or on our Facebook or Twitter sites.

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Friday, October 24, 2014

Prenatal & Newborn Screening for Critical Congenital Heart Disease

Pediatrics Editorial Board Member Beth Tarini, MD, MS, shares her expert perspective on a new article from our November issue. 

By: Beth Tarini, MD, MS
Public Domain Photo via Pixabay

Critical Congenital Heart Disease (CCHD) is a group of life-threatening heart defects for which timely detection and intervention can save newborns’ lives. To this end, many states across the US have implemented mandatory pulse oximetry screening of newborns in order to identify and treat infants with CCHDs before they become symptomatic.

A study by Johnson et al. in the November issue of Pediatrics (doi: 10.1542/peds.2014-1461) demonstrates that pulse oximetry screening for CCHD may have a low yield in a tertiary care birth center. Not surprisingly, this occurred because most of the infants with CCHDs born at the center were diagnosed by a fetal echocardiograph. In contrast, newborns referred to the tertiary care center from an outside birth center for treatment of a CCHD were more often diagnosed after birth – either based on pulse oximetry or clinical symptoms.

What should we do with this information? The authors point out that “improving access to and training in fetal echocardiography should also improve detection of these conditions.”  While this statement is technically true, it is impracticable. A total of 15 percent of women in the US do not receive adequate prenatal care, while 6 percent of US women either began prenatal care in the third trimester or did not receive any prenatal care

For these women, post-natal pulse oximetry remains their best hope for detecting CCHD in their newborns. For those women who do receive prenatal care, we would need to invest a significant amount of resources (e.g., training, manpower, equipment) to ensure that they all received prenatal ultrasounds of the same quality received by women at well-resourced tertiary care centers.

Even if we lived in a world where resources and funding were limitless, we must still be mindful that technology –whether an expensive fetal ultrasound or a simple pulse oximetry– is not infallible. In this study, an infant with CCHD had a normal fetal cardiac examination (i.e., no fetal echocardiography was performed) and a normal pulse-oximetry screening. This infant was only detected after symptoms prompted a clinical evaluation, reminding us that amidst all of this technology, a clinician’s watchful eye still has value for the patient.

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