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Question

My cousin and his wife recently found out that their unborn baby has Hypoplastic Left Heart Syndrome(HLHS), which is a rare heart disorder. I have done the research on this, and know what it is and what the chances of recovery are. Does anyone know more about the survival rates, and how much of a normal life she can lead with her condition? Any help would be appreciated. Also, what are some good charities to look into for medical expenses help??

Answer 1

What is the prognosis for children with hypoplastic left heart syndrome?
The outlook for children with HLHS has improved dramatically. While once uniformly fatal (with 95% mortality by one month of age) survival at 3 to 5 years of age is now about 60%. Most children enjoy a good quality of life without significant developmental problems Although the outlook has improved, decision-making about treatment is difficult due to the potential for suffering and distress associated with multiple surgeries and heart catheterizations and high medical costs, particularly in light of an uncertain long term outlook for the children. Our experience so far indicates that most children will reach adulthood in good health. Some children will need other surgical procedures such as a pacemaker for abnormal heart rhythms. Some children will need a heart transplant at some point in the future. Children are restricted from competitive sports and from very demanding physical activities but can otherwise do all the things that children enjoy doing. Overall, it is expected that these children have a good quality of life: have friends, play, and go to school just like other children.

NORD is the largest non-profit organization for rare diseases that I personally know of. ... their website is

http://www.rarediseases.org/

Also March of Dimes

www.marchofdimes.com
I hope that this helps!

Answer 2

Hypoplastic left heart syndrome consists of hypoplasia of the left ventricle and ascending aorta, maldevelopment of the aortic and mitral valves, an atrial septal defect, and a large patent ductus arteriosus. Unless normal closure of the patent ductus arteriosus is prevented with prostaglandin infusion, cardiogenic shock and death ensue. A loud single S2 and nonspecific systolic murmur are common. Diagnosis is by emergency echocardiography or cardiac catheterization. Definitive treatment is staged surgical correction or heart transplantation. Endocarditis prophylaxis is recommended.

Hypoplastic left heart repair
* This is a very severe heart defect that results from a severely underdeveloped heart, and causes death in most affected babies. Only a few cardiac centers have reported any success in treating this defect, but results are slowly getting better with surgical advances. Therefore, parents must decide how aggressively they want the medical team to treat their child, knowing the chances of a good outcome are low.
* The best reported results are with a series of 3 heart operations. The first operation is done in the first week of life: a complicated surgery in which a single vessel is formed from the pulmonary artery and aorta to create a blood supply to the lungs and the body.
* At about 4-6 months of age, the second operation is performed. A third operation is required a year later.
* A heart transplant may be performed to treat this condition, but donor hearts for infants are rare and the procedure can only be performed at a small number of centers.
Please see the web pages for more details on Hypoplastic Left Heart Syndrome (HLHS).

Answer 3

Hi,
I have a son who is 7 years old with (hlhs). The best thing I can tell you is every child is different. The best thing to do right now is to research childrens hospitals and visit with a pediatric cardiology and specially the surgeon who will be doing the surgeries if your cousin decides to go down that route. Pediatric cardiology is continuing progressing and we just don't know what is in store for these children. Just think 25 years ago there was no hope for them. As for charities you might want to check with your state programs that might be available for them. I hope I have helped some. Let me know if you have questions I can answer.