Desperately needing your help regarding my sick unborn child with Hypoplastic Left Heart Syndrome

[email hidden] (Martin) wrote in
:"]news:[email hidden]:

Quoted message said:

1. Norwood[/Sano] surger[y]
2. Heart Transplant
3. "Supportive care"

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.

Even in the year 2003/2004, these three options exist. The two surgical options may be more or less
emphasized, depending on a center's technical abilities to perform/support those options. About 10
years ago or so, the choices probably would have been weighted 33% each. The third option is less
emphasized now because the surgical survival has improved dramatically, but is still a
consideration.

Quoted message said:

1. Is there any state (hospital) in the U.S. where they will not force me to operate on my baby?

Yes.

Quoted message said:

2. Is it legal for me to withhold info (that the baby has HLHS)

I believe that would create more problems than it would solve for you.

I can appreciate your desire to find further information, but Usenet may not be the best source in
this situation. This is a complex topic and one which would best be suited to a long discussion
between you and your perinatologist and pediatric cardiologist, with particular attention to the
points that you raised here.

Sorry that I could not be of more help.

- TC, md Pediatric cardiology and electrophysiology

On Tue, 16 Dec 2003 1:05:04 -0500, Martin wrote
(in message <[email hidden]>😉:

What a terrible choice to be faced with. I am sorry you have to face it.

Quoted message said:

3. Do you have any other suggestions?

Have the baby at home using a midwife.

I would also recommend you see an attorney to answer your legal questions and not rely on usenet.

Steve

Martin said:

My unborn child was recently diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and is due any
day. I have 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
lemkefamily.comjun18toaug072002.htmlOpen ↗
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?
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

You should be making these decisions with supportive doctors. How does your obstetrician feel about
your decision?

Would suggest you go ahead and find a pediatric cardiologist to also advise you and to support
your decision.

Humbly,

Andrew

--
Dr. Andrew B. Chung, MD/PhD
Board-Certified Cardiologist
heartmdphd.comheartmdphd.comOpen ↗

"Terrence Chun, MD" <[email hidden]> wrote in message news:<[email hidden]>...

Quoted message said:

[email hidden] (Martin) wrote in :"]news:[email hidden]:

Quoted message said:

1. Norwood[/Sano] surger[y]
2. Heart Transplant
3. "Supportive care"

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.

Even in the year 2003/2004, these three options exist. The two surgical options may be more or
less emphasized, depending on a center's technical abilities to perform/support those options.
About 10 years ago or so, the choices probably would have been weighted 33% each. The third option
is less emphasized now because the surgical survival has improved dramatically, but is still a
consideration.

Quoted message said:

1. Is there any state (hospital) in the U.S. where they will not force me to operate on my baby?

Yes.

Quoted message said:

2. Is it legal for me to withhold info (that the baby has HLHS)

I believe that would create more problems than it would solve for you.

I can appreciate your desire to find further information, but Usenet may not be the best source in
this situation. This is a complex topic and one which would best be suited to a long discussion
between you and your perinatologist and pediatric cardiologist, with particular attention to the
points that you raised here.

Would concur.

Humbly,

Andrew

--
Dr. Andrew B. Chung, MD/PhD
Board-Certified Cardiologist
heartmdphd.comheartmdphd.comOpen ↗

Elizabeth, please email me privately at [email hidden]. I attempted to email you, but it bounced
back. I have contact information for you for other parents who have chosen comfort care for HLHS, as
well as contact information for parents of children who are thriving with it. I wish you well in
making this extremely difficult decision, from a mother who has been there.

Chris, mom to Stephen, almost 11, HLHS, transplant at 6 weeks