I am 22 weeks pregnant now and my baby has been diagnosed with Hypolastic Left Heart Syndrome, and we are going to see a Pediatric Cardiologist tomorrow for more details. Is there any extra information you can give me? I am trying to learn everything I can.
Hypoplastic left heart syndrome occurs when the "left" side of the heart, which receives blood from the lungs and pumps it out to the body, does not fully develop. There is a spectrum of severity for this disease, but most babies will require cardiac surgery at a specialized center within a few days of birth. Most infants these days will have 3 separate surgeries in the first few years of life, spaced apart to to be appropriate to the infant's cardiac and lung development.
The pediatric cardiologist will be very important as they will work with the neonatologists, you, and the pediatric cardiac surgeon to manage your baby's disease. The pediatric cardiologist will explain the surgeries, timing, and risks to you when you meet.
At the time of delivery, a neonatologist like myself will likely attend the delivery to take care of your baby. Most babies with hypoplastic left heart will be develop and grow until close to the expected due date. They can usually breath on their own, and will have some blood flow to the body through a vessel called the Ductus Arteriosus. Normally, the Ductus Arteriosus closes itself off within 24 - 48 hours after birth. The neonatologist will start a medication that will keep the Ductus Arteriosus open until your baby can be fully evaluated by the cardiologist and surgery can be planned.
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