Desperately needing your help. Hospital is forcing me to operate on my unborn child!
martsadowski@yahoo.com (Elizabeth)
12/16/2003 6:53:29 AM
My unborn child was recently diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and is due any day. I read that I have 3 choices: 1. Norwood surgeries - consists of 3 consecutive open-heart surgeries starting at about 1 week and the last one at about 2 years. 2. Heart Transplant 3. "Supportive care" meaning no surgeries - just comfort care until the end of life (usually only a few weeks). There are several considerations to making a decision: 1. Although the heart transplant has an about 80% survival rate, a matching heart donor is usually very hard to find. The risks are many, including rejection and the need to stay on immunosuppressants for the remainder of life. 2. Long-term results are not known yet since the procedure has not been around long enough. 3. Norwood surgeries are not a cure - they are just a treatment. The baby will never have a "normal" 4-chambered heart. Eventually they will need the heart transplant to survive. 4. The recovery from any of the above surgeries (all open- heart) is horrifying to see. Complications can be very serious and permanent (ex. Neurological defects) See this website http://www.lemkefamily.com/pages/jun18toaug072002.html 5. Up to 40% of these babies with hypoplastic hearts have other unrelated abnormalities / diseases. 6. Although the survival rate after the norwood surgeries is about 70-80%, my baby has other risk factors- both mitral and aortic valve atresias. This brings the survival rate down to about 50%. This is just regarding the survival, not mentioning anything about the quality of life of those "survivors." I read on the net that I can choose to provide "supportive care" from the above choices. I feel strongly that this would be the best option after all the above considerations. However, the hospital where I chose to have the baby decided for me that they will perform the surgeries on the baby against my will - if I would deliver there. I have 2 questions to anyone with accurate advice: 1. Is there any state (hospital) in the U.S. where they will not force me to operate on my baby? I live in NYC. 2. Is it legal for me to withhold info (that the baby has HLHS) from another hospital and after discharge (most babies with HLHS are discharged because it is almost impossible to detect in the first 2 days of life) and just let the baby live at home until the end of life? Someone told me that charges can be pressed against me. If this is an option and I will have a C-section, I will need to be hospitalized for 5 days (by which time HLHS may become diagnosed) - so can I ask that just the baby be discharged the next day with a relative? 3. Do you have any other suggestions? Thank you for your time - Elizabeth in NYC
Dan Evans
12/16/2003 5:04:47 PM
On Tue, 16 Dec 2003 06:53:29 GMT, martsadowski@yahoo.com (Elizabeth) wrote:
3. Do you have any other suggestions?
If the baby will require medical care that you don't want to provide, but that the hospital believes it must provide, then refuse to consent to the medical treatment and give the baby up for adoption. That way, the baby has a chance to live, and you are not responsible for the care. **Dan Evans **I post information, not advice.
Tracey
12/16/2003 7:07:51 PM
Elizabeth wrote: However, the hospital where I chose to have the
baby decided for me that they will perform the surgeries on the baby against my will - if I would deliver there.
