What to Ask
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Hypoplastic Left Heart Syndrome (HLHS)
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This page was last updated on: December 25, 2010
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FAQ - Surgeries


How do we decide between a heart transplant and the 3-stage surgery?
This is a tough decision, and one that you will need to discuss with your doctors and surgeons.  In a small percentage of HLHS cases, the baby's condition will require one or the other option so in those cases there may not be a choice.  Usually, however, parents can decide which option they would like to pursue.  There are many things to keep in mind about both options.

Specialization and hospital policies  first of all, you need to know that some surgeons specialize in EITHER transplants or the 3-stage surgery.  So, you want to decide which is the best option for you, and THEN find a surgeon who specializes in that type of surgery.  You also need to know the hospital's criteria for heart transplants.  For some hospitals, HLHS is the primary criteria for a transplant, while some hospitals do not allow transplants on babies who are candidates for the 3-stage surgery.  This is to keep the very limited number of donor hearts available to babies who have no other surgical option.

Pros and Cons of Heart Transplants
Advantages:  The biggest advantage of a heart transplant is that it gives the baby a fully functioning healthy heart.  Children with heart transplants may be better suited to live at high altitude than those with the 3-stage surgeries.  A transplant is done in one surgery, vs. the 3 open-heart surgeries required by the 3-stage procedure, reducing the risks associated with open-heart surgery.

Disadvantages: Unfortunately, there are also downfalls to transplants.  There is a shortage of donor hearts for infants, so not all babies waiting for a heart receive one.  Some estimates say that up to 25% of babies waiting for a heart die while waiting. If a heart is found, rejection is an issue throughout the child's life, as it can occur at any time.  Since the heart is foreign to the body, it sometimes tries to reject it.  To counter this response, anti-rejection medications are given to the child for life which have their own serious side effects.  Unfortunately, even with these medications, rejection can still occur.  Talk with the surgeon in more detail about the pros and cons of heart transplantation.

Pros and Cons of the 3-stage surgery
Advantages:  With the 3-stage surgery, there is no waiting necessary.  As soon as the baby is stabilized and ready for surgery, the first stage procedure can take place (usually within the first few days after birth).  Children who undergo the 3-stage procedure usually are on medications in between the surgeries, but many or all of these medications may be discontinued after the 3rd surgery.  Aspirin is usually taken once daily for life following the 3rd surgery as a blood thinner.  Rejection is not an issue since the baby's heart has been restructured and there is no living tissue added to the child's heart.   

Another benefit of the 3-stage surgery is that if it is not successful at any time in the child's life, a heart transplant may possibly be an option.  Therefore, the 3-stage surgery may sustain the child indefinitely, or until he or she is older and may require a transplant.  More hearts are available for older children and adults than for infants, so there is a better chance of receiving a heart at a later date.  In addition, if the transplant is needed in 10, 15 or 20 years, then the medical advancements at that time may include better transplant options  such as mechanical hearts or those that can be genetically similar to the child's which can eliminate the risk of rejection.  The possibilities for the future are very exciting and give children with HLHS an even greater chance at living very normal lives.

Disadvantages: There are some downfalls to the 3-stage surgeries.  Three open-heart surgeries are needed instead of one surgery for transplant, and each surgery carries risks.  The baby's heart is restructured to have only 2 functioning chambers instead of the normal 4, so the child's heart is not fully functioning or ideal.  Physical stamina may be less than that for someone with a healthy heart.  Living at high altitude while the child undergoes the surgeries may not be possible, or may lead to complications since the child has lower oxygen saturation levels than normal until after the 3rd surgery.

There may be other pros and cons to each surgery, so make sure you discuss this with the surgeons to help you decide upon the best choice for your baby.

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