A DIFFERENT PERSPECTIVE on Hypoplastic Left Heart Syndrome
Before Amanda Senna was referred to Children ’ s Hospital Colorado , where her unborn son would be treated for hypoplastic left heart syndrome ( HLHS ), she ’ d only heard rumors about low survival rates for fetuses who had heart conditions , and that had her panicking about her son ’ s survival .
Parents who learn their child will have a single heart ventricle might feel devastated , especially if they focus on statistics from the past . According to a study published in the Journal of the American College of Cardiology *, 30 years ago the average survival to age 5 for children with HLHS was as low as 50 percent .
Adel Younoszai , MD , who voiced his optimism for her son ’ s future quality of life .
“ They gave us so much hope ,” Amanda says . “ You go in and they hug you . They treat you like you ’ re part of their family .”
The overwhelmingly positive attitude of the teams at the Heart Institute and the Colorado Fetal Care Center , combined with modern facilities and highquality operations , set up Amanda to deliver her son Robert without complications , and without much of the anxiety she had expected .
Many parents like Amanda might not receive the information that average survival for HLHS is now up to 70 percent , and in many cases can be much higher .
JAMES JAGGERS , MD
When she arrived at Children ’ s Colorado , Amanda met with experts from both the Heart Institute and the Colorado Fetal Care Center . Here , they gave her son a 90 percent chance of survival .
Her care teams at Children ’ s Colorado gave her plenty of reasons to believe everything would be all right , from the stellar outcomes of James Jaggers , MD , cardiothoracic surgeon , who would operate on her son , to the nurses who created a calm and relaxing environment , to cardiologist
Chief of Pediatric Cardiothoracic Surgery Co-Director , Heart Institute Barton-Elliman Chair in Pediatric Cardiothoracic Surgery
Shortly after birth , Robert successfully underwent a Norwood procedure and , later , a Glenn procedure – standard treatments for HLHS . He will have a Fontan procedure sometime in the next two years .
At 6 months old , Robert shows few , if any , visible traces of his illness . It appears he is on his way to becoming the well-adjusted , happy child Dr . Younoszai predicted .
“ If they have a positive mama , they ’ re going to feel that ,” Amanda says . “ Do everything in your power to be positive . It affects how they turn out .”
* Children ’ s Hospital Colorado ’ s D . Dunbar Ivy , MD , Chief of Pediatric Cardiology , was one of the authors of the paper .
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CARDIOLOGY & HEART SURGERY