Welcome all friends and family of those young ones with Hypoplastic Left Heart Syndrome

I realized that I am one of many mothers that looks to the world wide web for more insight on something that at one time we had never heard of, but now know more about due to our children being born with "half a heart."

All those who know about it know ALL about it, so in Lamen's terms I will breifly describe the heart defect.

HLHS is a congenital heart disease thats cause is unknown. And prior to recent years, it was unable to be diagnosed till after birth, and in mose cases, after death. HLHS is when the left ventricle of the heart is underdeveloped and can't pump blood on its own. In the fetal heart, while the baby is still in utero, there is a passage for the blood to flow through called a "ductus". But when the baby is born, and breaths oxygenated air and uses its lungs, the ductus eventually closes, leaving babies with HLHS unable to pump blood accordingly, and lose life.

When first told about this defect the Dr. describe three choices. One, was to have a heart transplant. It is quite rare that a heart will be available, and very risky for infants to undergo such a complicated surgery. Two, was a three stage surgery that was introduced to surgeons just over 20 years ago. It is called the Norwood procedure. Three- was called "comfort care", in which case you would let nature take its couse and the baby would die within days of birth.

Obviously, the best chance at life would be the Norwood Procedure. Stage one, a shunt placed in the heart would allow blood to flow to both the lungs and the body. Stage two, the superior vena cava is attached to the pulmonary artery allowing gravity to flow blood to the head. Stage three would be the inferior vena cava being attachd in a place, all to alleviate the work that the right side and now the ONLY side would perform.

Stage one is done right after birth, stage two is usually done around 6 months, and stage three is done around the age of 2. Follow up work is sometims needed, but as this procedure is so young, studies are still being performed to advance and perfect the systems process.

The chances of a baby being for with HLHS is 2 in 10,000. And once you've had one, the chances of your next child having it are 1 in 4.

I created this blog so mothers and friends and family of these babies can ask questions. I have emailed complete strangers about things pertaining to this defect and the comfort I feel of relating to someone I don't even know is overwhelming. I've learned alot from other parents and I've gained strength from their successes. Please feel free to contact me.. or ask questions, or simply add your thoughts and prayers to all the AMAZING babies there are that have overcome this defect and are living normal active lives.

Bless all the little half hearts.

(To keep reading about our journey in chronological order, click on "Newer Post" just to the lower left of this page, and keep doing so.)

Comments

Kerri said…
I would love to be included on your blog roll! We also have a wonderful HLHS baby girl, Mary Clare. She was born on June 27, 2007, has had her Norwood and Glenn and is doing exceptionally well. We love to share our story!
Love, Kerri Pennington
www.babypennington.com

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