Hypoplastic Left Heart Syndrome

[Beverly]

Tomorrow my neice will go into the hospital to give birth to her son. As we know he has this defect we know that he will not live long after birth. This is a very difficult time for our family and it is more difficult because she lives in another state and we cannot be with her. Having had a congenital bicuspid aortic valve I asked my cardiologist if it was possible that there could be a genetic link through our side of the family but his response was that my problem was fairly common I guess by comparison but I guess I'm still left wondering. I guess they will have to get testing before considering whether or not to try to have another child as this will increase the risk of having another child with a birth defect. I feel so sorry that they are going through such a painful experience. It is really hard to get up each day and move forward knowing what is coming.

 

[Georgia]

Hi, Bev - I'm so sorry for your family. My prayers will be with you and them. This is tragic.

 

[Ross]

I've read this twice now and still don't know what to say. I'm so sorry that things like this happen. There just isn't anything that can make the hurt any less painful.

 

[TIM W.]

I'm with Ross on this one. Words aren't enough. I am really sorry for you and your family, Bev. Tim

 

[bvdr]

Dear Bev,
I too add my sympathy and prayers for your family. I have a great niece with a type of congenital myopathy and now her mother (my neice) has also recently been diagnosed with a myopathy that involves her heart. We don't know the details yet as testing is still continuing. When this type of thing happens I think it is only natural to wonder where it came from. My heart certainly reaches out to you...........................Betty(bvdr)

 

[Les]

My thoughts are with you and your family during this difficult time.
_______________
Les AVR '93 / '95

 

[Marty]

Heart transplant?

Heart transplant?

I know of a case where the diagnosis of hypoplastic left ventricle was made by prenatal ultrasound. They were prepared and were able to do a heart transplant in the early neonatal period. The donor of the heart was a baby with a severe brain abnormality incompatible with life. The surgeons who did this operation amaze me because the newborn heart is no bigger than a walnut.
They are located at the big Adventist medical center in southern California. Ask your niece's OB to check at a nearby children's hospital if there is such capability in your area. I would be surprised if there isn't.

 

[McCln]

Beverly

Beverly

You already know that with your condition, congental, is a birth defect. But as for passing of the gene, you need to talk to a gene person. On my mother's side, the gene is prevailant mostly in the female , not many of the male. Just keep asking till you find out for sure. I will pray for you and your family during this time of crises. Heart disease in any magnitude is always hard to take. Keep haning in there. Your family is strong. Take care.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[Granbonny]

Beverly

Beverly

I, too, will pray tonight for a miricle..Never give up..and I pray for your neice too.Bonnie

 

[Rebecca]

Hi Bev,

My prayers will be with you, your niece and her son. Check out this web site on Hypoplastic left heart syndrome:



http://www.choa.org/library/conditions/hlhs_whatishlhs.shtml

 

[lcwhitney]

I am so sorry this has happened. I have a cousin who also had a son born with this defect. The loss was hard on all of us. You and your family will be in my prayers. Only time and God will heal this wound for your family.

Lettitia