HLHS
Treatment
| History |
Alternatives | Outlook |
| In Utero | Corrective
Surgeries | Transplant | Compassionate Care |
"Compassionate Care" is the term used for forgoing surgical treatment in favor of providing the baby with as comfortable an environment as possible, and to let nature take its course. Since HLHS is nearly 100% fatal without medical intervention, this is a very sensitive topic. Every situation is unique, and each family must make this decisions based on their own beliefs and the child's individual condition. No family should ever be made to feel guilty for choosing compassionate care. One purpose for this website, however, is to help educate people about the extremely high current success rates compared with older published values. As with MTP, tragically in many cases those who choose compassionate care are only presented outdated statistics before making their decision. It is an especially devastating tragedy when outdated statistics and grim previews of life ahead are presented to the parents in a deliberate attempt to persuade parents to choose compassionate care. These recommendations are sometimes reportedly biased by a facility's lack of experience or a patient's lack of insurance. One of the purposes of this website is to provide information that will help give those who may be weighing alternatives an unbiased preview of what life will be like. Every family has their own story, and it is important to read the memorials as well as the success stories before making a decision. This website provides links to the support that is available to those expecting an HLHS baby (see HLHS support). |
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Join us in recognizing February 14, 2002 as "A Day for Hearts: Congenital Heart Defect Awareness Day."
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