Re: Prayers for a CHARGE family

[Guest guest]

Oh, Crystal, I am so sorry. So very sad.

Can you explain HLHS?

pam

Prayers for a CHARGE family

I found out a few weeks ago there is a little boy at the hospital that

Eva goes to that has HLHS then about a week and a half ago they were

told he also has CHARGE. His name is and sadly he passed away

yesterday morning. Please say alittle prayer for his family. There is

pictures and a video on Eva's site and a link to his underlinks on her

site.

Thanks,

Crystal and Eva

www.babysites.com/sites/crystalm1476/

[Guest guest]

Pam it stands for hypoplastic left heart syndrome; it's quite serious. Here

is a snippet from this website:

http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/hlhs.htm

:

What is Hypoplastic Left Heart Syndrome?

Hypoplastic Left Heart Syndrome (HLHS) is one of the most complex cardiac

defects seen in the newborn and remains probably the most challenging to

manage of all congenital heart defects. It is one of a group of cardiac

anomalies that can be grouped together under the description " single

ventriclehttp://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies\

/sv.htm> "

defects.

In a child with Hypoplastic Left Heart Syndrome, all of the structures on

the left side of the heart (the side which receives oxygen-rich blood from

the lungs and pumps it out to the body) are severely underdeveloped.

The mitral and aortic valves are either completely " atretic " (closed), or

they are very small. The left ventricle itself is tiny, and the first part

of the aorta is very small, often only a few millimeters in diameter.

This results in a situation where the left side of the heart is completely

unable to support the circulation needed by the body's organs, though the

right side of the heart (the side that delivers blood to the lungs) is

typically normally developed.

Blood returning from the lungs to the left atrium must pass through an atrial

septal defect

(ASD)http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/asd\

..htm>to

the right side of the heart.

The right ventricle must then do a " double duty " of pumping blood both to

the lungs (via the pulmonary artery) and out to the body (via a patent

ductus arteriosus

(PDA)http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/pda\

..htm>).

The patent

ductus arteriosus, a normal structure in the fetus, is often the only

pathway through which blood can reach the body from the heart. When the

ductus arteriosus begins to close, as it typically does in the first days of

life, the blood flow to the body will severely diminish resulting in

dangerously low blood flow to vital organs and leading to shock. Without

treatment, Hypoplastic Left Heart Syndrome is uniformly fatal, often within

the first hours or days of life.

>

> Oh, Crystal, I am so sorry. So very sad.

> Can you explain HLHS?

> pam

>

> Prayers for a CHARGE family

>

> I found out a few weeks ago there is a little boy at the hospital that

> Eva goes to that has HLHS then about a week and a half ago they were

> told he also has CHARGE. His name is and sadly he passed away

> yesterday morning. Please say alittle prayer for his family. There is

> pictures and a video on Eva's site and a link to his underlinks on her

> site.

> Thanks,

> Crystal and Eva

> www.babysites.com/sites/crystalm1476/

>

>

[Guest guest]

and Pam,

the Cincinnati Children's website is my favorite site to send people

for explanations of congenital heart defects. I see a lot of that in

my work as a prenatal genetic counselor. HLH is really serious (15

years ago it was seldom survivable, even as an isolated birth defect

with no other medical issues). HLH as part of CHARGE syndrome is

probably not survivable. I have talked with many parents of babies

with CHARGE and HLH who were deciding not to put their babies through

long painful surgery with little chance of recovery... always very sad.

Meg

Meg Hefner

Genetic Counselor St. Louis MO

>

> Pam it stands for hypoplastic left heart syndrome; it's quite

serious. Here

> is a snippet from this website:

>

http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/hlhs.htm

> :

> What is Hypoplastic Left Heart Syndrome?

>

> Hypoplastic Left Heart Syndrome (HLHS) is one of the most complex

cardiac

> defects seen in the newborn and remains probably the most challenging to

> manage of all congenital heart defects. It is one of a group of cardiac

> anomalies that can be grouped together under the description " single

>

ventriclehttp://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies\

/sv.htm> "

> defects.

>

> In a child with Hypoplastic Left Heart Syndrome, all of the

structures on

> the left side of the heart (the side which receives oxygen-rich

blood from

> the lungs and pumps it out to the body) are severely underdeveloped.

>

> The mitral and aortic valves are either completely " atretic "

(closed), or

> they are very small. The left ventricle itself is tiny, and the

first part

> of the aorta is very small, often only a few millimeters in diameter.

>

> This results in a situation where the left side of the heart is

completely

> unable to support the circulation needed by the body's organs,

though the

> right side of the heart (the side that delivers blood to the lungs) is

> typically normally developed.

>

> Blood returning from the lungs to the left atrium must pass through

an atrial

> septal defect

(ASD)http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/asd\

..htm>to

> the right side of the heart.

>

> The right ventricle must then do a " double duty " of pumping blood

both to

> the lungs (via the pulmonary artery) and out to the body (via a patent

> ductus arteriosus

>

(PDA)http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/pda\

..htm>).

> The patent

> ductus arteriosus, a normal structure in the fetus, is often the only

> pathway through which blood can reach the body from the heart. When the

> ductus arteriosus begins to close, as it typically does in the first

days of

> life, the blood flow to the body will severely diminish resulting in

> dangerously low blood flow to vital organs and leading to shock. Without

> treatment, Hypoplastic Left Heart Syndrome is uniformly fatal, often

within

> the first hours or days of life.

>

[Guest guest]

Meg (and LIsa)

Funny, I don't know as I have ever seen it listed at HLH--but surely recognize

the description.

I am assuming that this could be seen on ultrasound during prenatal testing?

pam

Re: Prayers for a CHARGE family

and Pam,

the Cincinnati Children's website is my favorite site to send people

for explanations of congenital heart defects. I see a lot of that in

my work as a prenatal genetic counselor. HLH is really serious (15

years ago it was seldom survivable, even as an isolated birth defect

with no other medical issues). HLH as part of CHARGE syndrome is

probably not survivable. I have talked with many parents of babies

with CHARGE and HLH who were deciding not to put their babies through

long painful surgery with little chance of recovery... always very sad.

Meg

Meg Hefner

Genetic Counselor St. Louis MO

>

> Pam it stands for hypoplastic left heart syndrome; it's quite

serious. Here

> is a snippet from this website:

>

http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/hlhs.htm

> :

> What is Hypoplastic Left Heart Syndrome?

>

> Hypoplastic Left Heart Syndrome (HLHS) is one of the most complex

cardiac

> defects seen in the newborn and remains probably the most challenging to

> manage of all congenital heart defects. It is one of a group of cardiac

> anomalies that can be grouped together under the description " single

>

ventriclehttp://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies\

/sv.htm> "

> defects.

>

> In a child with Hypoplastic Left Heart Syndrome, all of the

structures on

> the left side of the heart (the side which receives oxygen-rich

blood from

> the lungs and pumps it out to the body) are severely underdeveloped.

>

> The mitral and aortic valves are either completely " atretic "

(closed), or

> they are very small. The left ventricle itself is tiny, and the

first part

> of the aorta is very small, often only a few millimeters in diameter.

>

> This results in a situation where the left side of the heart is

completely

> unable to support the circulation needed by the body's organs,

though the

> right side of the heart (the side that delivers blood to the lungs) is

> typically normally developed.

>

> Blood returning from the lungs to the left atrium must pass through

an atrial

> septal defect

(ASD)http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/asd\

..htm>to

> the right side of the heart.

>

> The right ventricle must then do a " double duty " of pumping blood

both to

> the lungs (via the pulmonary artery) and out to the body (via a patent

> ductus arteriosus

>

(PDA)http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/pda\

..htm>).

> The patent

> ductus arteriosus, a normal structure in the fetus, is often the only

> pathway through which blood can reach the body from the heart. When the

> ductus arteriosus begins to close, as it typically does in the first

days of

> life, the blood flow to the body will severely diminish resulting in

> dangerously low blood flow to vital organs and leading to shock. Without

> treatment, Hypoplastic Left Heart Syndrome is uniformly fatal, often

within

> the first hours or days of life.

>