Diagnosis of congenital heart disease still frequently missed or delayed
Infant deaths due to missed or delayed diagnosis of congenital heart disease (heart defects present at birth) continue to be a significant problem, say researchers in the October 2008 issue of Archives of Pediatrics and Adolescent Medicine. "Congenital heart disease affects 8 to 12 per 1000 live-born infants and is one of the most common and serious types of birth defects," writes Dr. Ruey-Kang R. Chang, of UCLA Medical Center. "Many infants born with congenital heart disease are discharged from the hospital nursery with their conditions undiagnosed."
Dr. Chang and colleagues looked at data from 898 infants in California who died of congenital heart disease within a year of birth between 1989 and 2004 who either did not undergo surgery or had an unknown surgery status. Of the 898 infants, 152 had congenital heart disease that was missed. The most common missed diagnoses were hypoplastic left heart syndrome (58 babies) and coarctation of the aorta (41 babies).
Detecting congenital heart defects can be improved by doing an ultrasound (echocardiogram) of the infant's heart prior to birth in a high-risk pregnancy and by doing a thorough heart examination of the infant prior to his/her going home from the hospital nursery. Recent research has also suggested that pulse oximetry screening of all newborns prior to leaving the hospital might detect more cases of heart defects. In addition, at an infant's first visit to the pediatrician, usually at 3 to 5 days of age, the doctor can give each infant a thorough heart examination.
Chang, Ruey-Kang R., Michelle Gurvitz, & Sandra Rodriguez. "Missed Diagnosis of Critical Congenital Heart Disease." Archives of Pediatrics & Adolescent Medicine 162(2008): 969-974.
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Comments
Our son’s diagnosis of Hypoplastic Left Heart Syndrome was not picked up in the routine 16 week ultrasound (although a pediatric cardiologist watched the video of the ultrasound years later and said “clearly there is evidence of a heart defect.”) Fortunately, he “crashed” in the nursery and we were in the right hospital at the right time. He is now, after three open-hearts, a happy, healthy 10 year old. For those less fortunate than us, a simple test like checking the pulse ox. before discharge could possibly save a life. And it would cost the insurance company almost nothing.
My son was diagnosed 3 days after his birth with Hypoplastic Left Heart Syndrome. Thank The Lord that he had developed a murmur and his pediatrician heard it. He was immediately seen by a cardiologist who was stunned by the fact that this defect had not been picked up during my 18 week ultrasound. My son recently underwent his third surgery and is doing awesome!
it would be wonderful if we could start getting more doctors doing fetal heart examines prior to babies leaving the hospital. My son is 18 years old Hypoplastic Left Heart Syndrome (HLHS). We were lucky and he developed a murmur and fluid in the lungs before he left the hospital and they caught his condition before he crashed.
Our son’s Hypoplastic Left Heart Syndrome was also missed in a 16 week and 20 week 3D/4D ultrasound. I consider it a blessing, because there would have been nothing they could have done for him while he was in utero. We just would have worried. Thank goodness the nurse caught the issue with his color during the final newborn assessment. He had surgery when he was 3 days old.
Our son has Hypoplastic Left Heart Syndrome and it was not detected on 20 week ultrasound or at the hospital after birth. We were discharged home. We were home for 3 hours before his color started changing and rushed to the ER. He is post Norwood and doing good now. We believe this should have been detected so we could have had our son at a hospital that was equipped to deal with his defect.
My ultrasound at 22 weeks gestation missed my daughter’s HPLH, and so did the hospital after she was born. We were sent home with a still very blue baby. We were home for about an hour before calling emergency services. She passed away 40 minutes later. This is not something anyone should have to go through, especially now with all the “new” technology that we put our trust into our doctos to use. We didn’t have a chance to prepare ourselves, and she didn’t have a chance to fight. We should’ve had a chance.
My Son has Transpostion of THE GREAT ARTERIES… We found out about his condition not even 30 minutes after I gave birth to him. All my Ultrasounds looked normal and because of this particular condition without an Fetal Echocardiogram it would not hae been detected. He was seen by a cardiologists immediatley and has undergone one open heart and awaits another in one month. He is soo strong and Happy!