Anybody know somebody that survived hypoplastic left heart syndrome?

Yes. As a pediatric cardiologist, I have many patients who have hypoplastic left heart syndrome. Many are doing rather well, attending school. Obviously all do not survive, and some struggle with serious health issues and multiple medications. The "long" long term is not known at this time. Just over 20 years ago many doctors offered no surgery, and just hospice type care. We've come a long way.
Sure! Check out this website for information on how to learn about survivors: http://texaschildrens.Org/locate/doctors/ayres, -nancy/.

Related Questions

Anybody have or know somebody that survived who has hypoplastic left heart syndrome?

Yes. As a pediatric cardiologist, I have many patients who have hypoplastic left heart syndrome. Many are doing rather well, attending school. Obviously all do not survive, and some struggle with serious health issues and multiple medications. The "long" long term is not known at this time. Just over 20 years ago many doctors offered no surgery, and just hospice type care. We've come a long way. Read more...
Absolutely. In fact, in the current era, in experienced centers, survival for hypoplastic left heart syndrome exceeds 80%. Hypoplastic left heart syndrome, unfortunately, is fatal without surgery at a very early age, though. Read more...

Is it possible? For a baby to survive with? Hypoplastic left heart syndrome?

Sure! The perinatal mortality and infant mortality with hlhs is at least 30%, even in the best centers of congenital heart defects. It is uniformly lethal if undiagnosed/untreated. See: http://texaschildrens.Org/locate/doctors/ayres, -nancy/. Read more...

How to choose where to have a baby with hypoplastic left heart syndrome who will require a norwood procedure: need detailed source of info on costs, survival rates, etc at various hospitals.

Tertiarycare hospi. Choose nearest university hospital with nicu with reputable peds cardiac surgeons with experience. Read more...
Tough decisions. I'm sorry that you have to deal with this and wish you the best. There are not that many centers that do this. Costs will depend on your insurance and the hospital you pick. As far as survival, these procedures are very rare. You can ask for the number they do and their survival rates. They should give that to you. For hplhs heart transplant is often needed. Good luck and take care. Read more...
Ask. If you have a fetal echo to diagnose prenatally this condition, the physician counseling you about the diagnosis is a good place to start asking these questions. And do ask these questions. Read more...
Great question. One of the most valuable resources for parents of a child with hypoplastic left heart syndrome is an organization called sisters by heart. They have great parent resources to help parents develop expectations and help to learn about the important factors to help your baby as healthy as possible. http://www.sisters-by-heart.org. Read more...
Begin by connecting . With a resource group in your area, to talk to others who have faced a similar challenge. Support groups are available online, at sites such as http://tchin.Org/index.Htm . Speak to different doctors, surgeons, and families, as each may have helpful opinions and information. Your fetal cardiologist (doctor who read the echocardiogram and provided this diagnosis) should be able to help as well. Read more...

What is hypoplastic left heart syndrome?

A congenital defect. Hypoplastic left heart syndrome (hlhs) is a specific type of congenital heart defect that consists of varying degrees of underdevelopment of the left-sided heart structures including the mitral valve, left ventricle, aortic valve, and aortic arch. Hlhs most likely has a genetic cause and occurs early during fetal development, however the genes involved have not yet been entirely elucidated. Read more...

What cuases hypoplastic left heart syndrome?

Multifactorial. 2-6% recurrence risk with 1-2 prior affected siblings and up to 25% risk with rare familial autosomal recessive forms - both point to genetic underpinnings. The pathological changes center around severe aortic and mitral valve stenoses and hypoplasia/interruption of the aortic arch. Read more...

Hypoplastic left heart syndrome, what to do?

Major defect. Limited options & generally fatal in 1st month w/o surgery. First must check for associated conditions: genetic, neurological, other conditions might preclude surgical intervention. Even in ideal candidate, options are generally transplant or staged palliation (series of 3 major surgeries in the first few years of life with a lifetime of care and potential procedures). It's a hard road. Good luck. Read more...

How is hypoplastic left heart syndrome cured?

It cannot be cured. Hypoplastic left heart syndrome (hlhs) is a congenital defect that occurs early during fetal development and it cannot be cured; babies are born with it. It is possible to treat hlhs with surgical and/or catheter-based therapies, but the anatomic defects cannot be reversed. There are newer fetal interventions under investigation that may improve the outcomes, but they also are not curative. Read more...

Can you explain hypoplastic left heart syndrome?

Complex heart defect. 2-6% recurrence risk with 1-2 prior affected siblings and up to 25% risk with rare familial autosomal recessive forms - both point to genetic underpinnings for hlhs. The pathological changes center around severe aortic and mitral valve stenoses and hypoplasia/interruption of the aortic arch. Read more...