It is every parent's worst nightmare -- and it can happen more often than many people think. The National Institute of Health , reports that 8 out of every 1,000 babies in America (or approximately 35,000 a year) will be born with some form of heart defect, making it the most common kind of birth defect in the country. At one time, children born with severe forms of heart defects faced a decreased life expectancy and in extreme cases did not survive the first few weeks or months of life. However, technology is changing these prospects -- and a brand new form of fetal heart surgery may bring even more hope to children born with a rare, severe heart defect known as hypoplastic left heart syndrome, or HLHS.
According to the Mayo Clinic, hypoplastic left heart syndrome is a rare but serious heart defect marked by underdevelopment of the left side of the heart, including the left ventricle, mitral valve and aortic valve and sometimes even the aorta itself. Because it is so underdeveloped, the left side of the heart cannot pump blood properly, so the right side of the heart must pump blood both to the lungs and to the rest of the body.
Babies born with this heart defect are often diagnosed at birth because of signs and symptoms like cyanosis, difficulty breathing, poor feeding and lack of responsiveness. Sometimes though, this can be diagnosed before the baby is ever born through ultrasound, which underlines the importance of
prenatal testing. In this case, early diagnosis can mean that treatment can begin before the baby is ever born. For HLHS, this is literally a life-and-death issue: if left untreated, this condition is fatal within the first few weeks of life. The Boston Children's Hospital, many surgeries - known as fetal interventions - are now performed in utero to help begin to fix this serious defect. In fact, it has been the standard of treatment for HLHS for many years.
Thus, fetal heart surgery is not new for treating HLHS. However, in April of this year, doctors at the Children's Hospital of Philadelphia used new surgical techniques to treat Stosh Frydlewicz before he was born. In Stosh's case, the situation was made more complex by the fact that in addition to HLHS, Stosh also suffered from another defect known as a blocked atrial wall, which prevented blood from passing into the lungs. However, surgeons were able to place a needle through his mother's abdomen and uterus and into Stosh's heart to fix the blocked atrial wall and get the blood flowing properly. Stosh remains the first baby with both HLHS and a blocked atrial wall to survive this kind of surgery - though he still faces a long road of heart surgeries in the future to fully correct this problem.
The takeaway here is that congenital birth defects, while serious, are not the death sentence that they once were. Modern technology and more advanced fetal interventions are now able to improve the chances of survival and give parents and families hope for the future of their unborn babies.
Brian Wu graduated with a Bachelor of Science degree in Neurobiology. Currently, he holds a PhD and is an MD candidate (KSOM, USC) in integrative biology and disease. He is also an experienced writer and editor for a number of prestigious web pages and the founder of Health Stories for Kids . Brian values the ability of all ages to learn from the power of stories. His mission is to write about health conditions, educational topics and life situations in an entertaining way in order to help children understand their own health conditions and daily circumstances.
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