Hypoplastic Left Heart Syndrome

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Hypoplastic Left Heart Syndrome
Hypoplastic Left Heart Syndrome

image by: Gradys Fight with Hypoplastic Left Heart Syndrome

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Q & A's

When explaining Jack's condition to people who find out or ask about it, I've sort of developed a script. It's so mechanical and rehearsed it almost comes out on cruise control. It usually starts with "He has hypoplastic left heart syndrome" and that alone, leaves people dumbfounded. I skip over the actual meaning of "hypoplastic" and immediately proceed to laymen's terms, "he has half a heart."

If people are actually interested in the details, they will ask which half- which leads me down the road less traveled, using big words like "aortic and mitral valve stenosis" to which some people actually are familiar with. I usually let out a sigh of relief in this case, because I…

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 Q & A's

When explaining Jack's condition to people who find out or ask about it, I've sort of developed a script. It's so mechanical and rehearsed it almost comes out on cruise control. It usually starts with "He has hypoplastic left heart syndrome" and that alone, leaves people dumbfounded. I skip over the actual meaning of "hypoplastic" and immediately proceed to lamen's terms, "he has half a heart."

Half Heart Whole Life

A HLHS Dad's Blog.

Hypoplastic Left Heart Babies

I wanted to provide this site for all the people who type "Hypoplastic Left Heart Syndrome" into their search engines. Whether your baby was just diagnosed, or your child is about to have surgery, or has already had the surgeries, or you simply want to reach out for some support and comfort from people who are going through the same thing as you.

Hypoplastic Left Heart Syndrome

Welcome to the HLHS Parent information page. This site was designed by parents of a child with HLHS to help other parents receiving the prenatal diagnosis of Hypoplastic Left Heart Syndrome.

Bowen's Heart

We're here to share our heart...his name is Bowen.

Hope for Baby Bennett

How the journey to mend our son's broken heart changed our family forever...

Isabelle's Heart ~ Our Journey with HLHS

Hypoplastic Left Heart Syndrome (HLHS) was diagnosed at our ultrasound at 18 weeks. This is a blog about a Congenital Heart Defect (CHD) called HLHS and our journey with Isabelle; our visits to University of Michigan and C.S. Mott Children's hospital; and our life.

Jans Cascade

Hypoplastic Left Heart Syndrome is one of the most complicated congenital cardiac defects. It can easily be diagnosed at the fetal stage with the use of Echocardiography. Surprisingly, fetuses do well even with the presence of this condition as long as they are confined to the womb.

Tehilla's Heart Journey

When I was 17 weeks pregnant with Tehilla, we heard for the first time the words: Hypoplastic Left Heart Syndrome. The words came crashing down on us, and we were left paralyzed by the diagnosis. We were very much alone, floundering in a sea of medical terms and a horrifying decision to make. We found fellow "heart mamas and heart dads" online who helped us decipher the information and find proper resources. These heart mamas advised me to start a blog, like they all did. It was to be used to update family and friends of our heart warrior's progress. So, I did. I started this blog and started writing, as a release for myself, and kept the blog closed to the public. With each update, I put a little more design into the blog, knowing that with many of the preliminary tests we did, I might never be able to publish the blog. But thank G-d, Tehilla is now a week and a half old, and this blog went public the day she was born.

CDC

Soon after a baby with hypoplastic left heart syndrome is born, multiple surgeries done in a particular order are needed to increase blood flow to the body and bypass the poorly functioning left side of the heart. The right ventricle becomes the main pumping chamber to the body. These surgeries do not cure hypoplastic left heart syndrome, but help restore heart function. Sometimes medicines are given to help treat symptoms of the defect before or after surgery. Surgery for hypoplastic left heart syndrome usually is done in three separate stages.

Children’s Hospital of Philadelphia

In a child with HLHS: •The mitral valve, which separates the two left chambers of the heart, is too small or completely closed (atretic). •The left ventricle (the lower, pumping chamber) is very small. •The aortic valve, which separates the left ventricle and the aorta, is too small or completely closed (atretic).

Cincinnati Children's

The first operation in the staged approach is known as the Norwood operation and is typically performed in the first week of life. With the Norwood operation, the right ventricle becomes the systemic or main ventricle pumping to the body. A "new" or "neo" aorta is made from part of the pulmonary artery and the original, tiny aorta, which is reconstructed / enlarged to provide blood flow to the body. Finally, to provide blood flow to the lungs, a small tube graft is placed either from an artery to the lung vessels (called a modified Blalock-Taussig shunt) or from the right ventricle to the lung vessels (called a Sano modification). Because of the extensive reconstruction of the aorta that must be done, this operation is one of the most challenging heart surgeries in pediatrics. The subsequent operations in the staged reconstruction plan are the bi-directional Glenn procedure, typically done at 3 to 6 months of age, and the Fontan operation, typically done in children older than 2 or 3 years.

The Patient Guide to Heart, Lung, and Esophageal Surgery

The first of these three surgeries is usually performed in the first weeks of life. During this procedure, the cardiothoracic surgeon will ensure that there is adequate blood flow to your baby’s body and lungs, and that blood mixes freely within the heart. In some cases, this can be accomplished with a catheterization procedure performed by an interventional cardiologist. In very rare cases, the first surgery may not be required at all.

UCSF Medical Center

Treatment for hypoplastic left heart syndrome requires either a three-step surgical procedure called staged palliation or a heart transplant. Staged palliation is considered one of the major achievements of congenital heart surgery in recent years. The survival rate for children at age 5 is about 70 percent and most of these children have normal growth and development. This three-step surgery procedure is designed to create normal blood flow in and out of the heart, allowing the body to receive the oxygenated blood it needs.

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