Welcome all friends and family of those young ones with Hypoplastic Left Heart Syndrome
This is the story of our roller coaster ride that is our son being diagnosed with HLHS at 20 weeks in utero. Many families are turning to those who have made this journey to gain insight, comfort, and education on something that likely just turned their world upside down. Here is our journey for you to read and pull from however you need.
HLHS (Hypoplastic Left Heart Syndrome) 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 most 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.
This video illustrates it in the best way to help you understand.
When first told about this defect (for us, it was at our 20 week ultrasound that they discovered it) the Dr. offered three choices. One, was to have a heart transplant. It is quite rare that an infant heart will be available, and very risky for newborns 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 course 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. (See video above.)
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, go to "The Norwood" and then "Glenn" and so on from the list in the upper left hand corner.)