Now you’re numb. Instead of walking on air, you’re suddenly walking into the unknown. They tell you your fetus has hypoplastic left heart syndrome — a lot of big words that mean the left side of their heart hasn’t developed as it should, so it can’t pump blood very well. And then they use the word “surgery.” It’s a lot to take in. But we’re here to help.
Cleveland Clinic Children’s pediatric cardiologists and heart surgeons are specially trained to diagnose and treat babies born with hypoplastic left heart syndrome (HLHS). They have the experience and skill needed to give your child their best possible chance to lead a long and healthy life.
Why Choose Cleveland Clinic Children’s for Hypoplastic Left Heart Syndrome Care?
Our board-certified and fellowship-trained pediatric cardiologists (heart doctors), pediatric heart surgeons and fetal care specialists offer highly skilled, compassionate care before and after birth. From diagnosis to treatment to ongoing support, your child’s health is in the hands of dedicated experts. Meet our team.
Skilled collaborative providers:
Many specialists — including those in pediatric and fetal surgery, maternal-fetal medicine, Ob/Gyn, cardiology, neurosurgery, genetics, radiology and more — work together with fetal care coordinators to provide care and emotional support before and after delivery.
Congenital (born with it) heart conditions, like HLHS, typically require continued care over a lifetime. We provide a seamless transition from pediatric care to adult heart care when the time comes.
We’re one of the few hospitals in the nation with specially trained providers with extensive knowledge and experience in maternal and fetal care. They can help you throughout your pregnancy, prepare you for delivery and care for you and your high-risk baby after birth.
We understand how unsettling and challenging HLHS can be. In addition to the best medical care, we make sure you have all the emotional support, information and resources you need. The lines of communication are always open between you and your child’s provider. We consider you an important and valued part of their care team.
U.S. News & World Report consistently ranks Cleveland Clinic Children’s a top hospital in the nation. Newsweek has also named us a top hospital in the world.
Medical care for infants with HLHS typically requires in-person visits with your child’s provider, but virtual visits, using your smartphone, tablet or computer, may be available for follow-up care and second opinions.
Diagnosing Hypoplastic Left Heart Syndrome at Cleveland Clinic Children’s
While you’re pregnant, a prenatal ultrasound might show a difference in your fetus’s heart structures. In that case, your provider may recommend:
- A fetal echocardiogram (special ultrasound of the fetus’s heart) to confirm HLHS.
- A consultation with a pediatric cardiologist to explain the diagnosis and offer options for care.
- Working with our fetal care specialists who can help plan a safe delivery and describe next steps after birth.
After you deliver, you or your provider may notice that your baby has certain HLHS symptoms, such as:
- Blue or gray skin (cyanosis).
- Breathing problems.
- Trouble feeding.
- Low energy or fatigue.
- Sweaty or clammy skin.
- Weak pulse or rapid heartbeat.
Our specialists use different tests to diagnose HLHS in your baby:
- Chest X-ray.
- Echocardiogram (Echo).
- Electrocardiogram (EKG).
- Pulse oximetry (pulse ox) screening to check your baby’s blood oxygen level.
Meet our hypoplastic left heart syndrome team
At Cleveland Clinic Children's, many different specialists will work together to diagnose and treat your child. Your team may include:
- Pediatric cardiologists.
- Pediatric heart surgeons.
- Fetal care specialists.
- Maternal fetal care specialists.
- Genetic counselors.
- Fetal care coordinators.
- Nurse care coordinators.
Who Treat Hypoplastic Left Heart Syndrome
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Hypoplastic Left Heart Syndrome Treatment at Cleveland Clinic Children’s
Cleveland Clinic Children’s pediatric cardiologists use certain medications right away to help keep the fetal blood vessels open and working right. Your baby may also need help with breathing. Babies born with HLHS typically need several surgeries to direct blood flow to their lungs and body. Our pediatric heart surgeons do these surgeries in three stages:
We do this surgery during the two weeks after birth. Our experts reconstruct your baby’s aorta to increase blood flow to their body. We place a tube (shunt) to keep blood flowing to their pulmonary arteries.
Bidirectional Glenn shunt procedure
When your baby is between 4 and 6 months old, our pediatric cardiac surgeons do a second surgery. We remove the old shunt and place a new shunt that connects a large vein (superior vena cava) to your baby’s pulmonary arteries. This connection helps your baby’s blood flow directly to their lungs so their right ventricle (heart’s lower chamber) doesn’t have to work as hard.
When your child is between 18 months and 4 years old, our pediatric cardiac surgeons do the last surgery. We connect another large vein (the inferior vena cava) to their pulmonary arteries. This connection lets oxygen-poor blood returning from their body go directly to your child’s lungs instead of mixing with oxygen-rich blood in their heart.
In certain severe forms of HLHS, your provider may talk with you about doing a heart transplant instead of the three surgeries. We know how scary that sounds, and we want you to know that we’ll be there for you every step of the way, offering expertise, compassion and support. As with all our care, we’ll treat your child as if they were our own.
Caring for Your Child With HLHS
Cleveland Clinic Children’s pediatric cardiologists continue to care for your child after the three surgeries are complete. Specialized care includes:
- High-risk monitoring of your baby between the first and second surgeries.
- Nurse care coordinators who will help you coordinate your child’s care with their cardiologist and other specialists.
- Long-term follow-up care for those who had the Fontan procedure.
Surgery doesn’t cure hypoplastic left heart syndrome. Your child will need lifelong care from a cardiologist. They may need heart medication and may need antibiotics before dental procedures and certain other surgeries to prevent endocarditis (a heart infection).
They may also need to limit physical activities and competitive sports, but your child’s cardiologist will describe what’s right for them. When they reach adulthood, your child should get ongoing care from a cardiologist who’s an expert in adult congenital heart disease.
Taking the Next Step
Finding out your child has a serious heart problem is probably the last thing you thought would happen. It’s never easy to hear these things. That’s why having an experienced, compassionate healthcare team sharing this unexpected journey with you is so important. Cleveland Clinic Children’s pediatric cardiologists and heart surgeons are experts in their field, and they’re ready to help you and your child.
Make an Appointment
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