A Journey of the Heart
Ethan Markus Lindberg
Our story begins just as many others do. With the joy of discovering we were having a baby. Newly married, we were eager to start a family and in October 2004 we found out we would be welcoming a new baby the following summer. At the suggestion of my wonderful OBGYN at Northwestern in
January 19, 2005 my husband and I sat anxiously in the ultrasound room. The perinatologist came in and began the ultrasound. To our relief he did not find any markers for Trisomy 18 and felt confident things were fine. He also told us we were having a baby boy. Our little boy was positioned in such a way that it was hard for the doctor to see his heart. After some repositioning, the doctor said that while all looked okay, he noticed a “spot” on the heart. Sure it was probably nothing, he suggested we go have lunch and he would run our baby’s pictures by a pediatric cardiologist that just happened to be in the office that day. We returned from lunch to a very worried cardiologist, Dr. Gotteiner, who wanted to do an immediate fetal echo. She diagnosed him with aortic stenosis and evolving Hypo Plastic Left Heart Syndrome, a severe congenital heart defect. Hypo Plastic Left Heart Syndrome (HLHS) occurs when the left side of the heart does not grow properly and is completely abnormal. The left side of the heart is the strongest and most important half of the heart. While there is no cure, there is a series of three palliative surgeries that allow children to live with his defect.
This was a devastating diagnosis. We listened through tears as Dr. Gotteiner explained her worry that our little boy would not make it through the pregnancy. We discussed the palliative surgeries for HLHS and asked a few questions about living with this defect. The long term outlook for HLHS is unknown. The oldest survivor is in their twenties, since it’s in the last two decades the palliative surgeries have been perfected. Children that do live into their teens are often sick and limited by their heart defect. Then she told us about a doctor at Children’s Hospital Boston, Wayne Tworetzky, who was doing experimental fetal interventions, dilating the aortic valve inutero with the hopes of increasing blood flow to the left side thus promoting growth. He’d had some success. Some children were actually born with a healthy functioning left ventricle. And others, more commonly, needed immediate surgery, but the left side of their heart was contributing to their circulation. Most children with HLHS do not have a left ventricle, forcing all the blood to be pumped entirely by the right side of the heart, something it was never designed to do.
Within 48 hours my husband Erik and I were on the phone with Dr. Tworetzky learning about this fetal intervention. In order to qualify for this intervention I needed to have an amniocentesis, which showed our little boy’s chromosomes were completely normal. We also had to travel to
We elected to have Ethan born in
Had I agreed to the immediate amniocentesis on that cold December day, I would have gone through the remainder of my pregnancy assuming I would have a healthy baby boy. Something told me to wait and have the ultrasound; a decision that lead us to
For more information contact:
Jessica Lindberg
Check out Ethan's website
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