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Hypoplastic Left Heart Syndrome

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July 3rd, 2012, 07:28 AM
Join Date: May 2012
Posts: 114
My nephew/Godson was born on 7/4/1996 with Hypoplastic Left Heart Syndrome. (Hypoplastic left heart syndrome occurs when parts of the left side of the heart (mitral valve, left ventricle, aortic valve, and aorta) do not develop completely. The condition is present at birth (congenital).)

He had problems as soon as he was born, turning blue and weezing. He was sent to St. Louis Children's Hospital (3 hrs from home). He had his first open-heart surgery at 3 days old to help correct this, it is 1 in a series of 3 that he had.

The Norwood procedure, in this procedure, doctors reconstruct the main blood vessel supplying blood to the body (the aortic arch) and insert a tube (shunt) connecting the aorta to the blood vessel supplying the lungs (the pulmonary artery).

The second operation, the bidirectional Glenn procedure or hemi-Fontan, in this procedure, they connect some of the veins carrying blood from the body to blood vessels carrying blood to the lungs. This surgery allows most of the blood to flow directly from the body into the lungs. Blood with more oxygen is pumped to the aorta to supply oxygen to the body's organs and tissues. This approach reduces the work of the lower-right heart chamber (right ventricle) by allowing it to pump blood only to the body. He had this surgery at 3 months old.

When he was close to 2, he had the 3rd & final surgery, the Fontan procedure, the remaining blood vessels carrying blood from the body are connected to the blood vessels carrying blood to the lungs. This surgery allows the rest of the blood coming back from the body to go to the lungs. The blood with oxygen and the blood without oxygen no longer mix in your child's heart.

I will never forget seeing him in the hospital at a few days old laying there so helpless with all the wires and tubes and he was unconscious! The Dr's had covered his chest with a washcloth while we visited him, but my sister moved it and wanted to see... he had swelling in his chest so they weren't able to close him up immediately after surger and had this piece of plastic inserted keeping his ribs spread open and you could see his tiny little heart beating... it was indescribable!

My Godson will turn 16 tomorrow, he is on heart medication, blood pressure pills and water pills to prevent fluid build up. They said sometime in his late teens he may have some difficulties and may need a heart transplant later in life. Originally they told my sister life expectancy could be mid 30's but with todays medicine and how well he has responded to it all, I would never put a limit on his life!! He is such an intelligent, thoughtful and handsome young man!!

Angel Baby #1 - 12/29/2003 (9 weeks, lost baby at 6-7 weeks)
Angel Baby #2 - 7/10/2012 (11 weeks 5 days, lost baby at 6 weeks 1 day)
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July 11th, 2012, 02:58 PM
geogeek's Avatar Marsi's Mommy
Join Date: May 2009
Location: In yonder mountains
Posts: 9,339
Thank you for sharing. I am glad that he is doing so well.

Thank you *kiliki* for my beautiful siggy!

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July 11th, 2012, 08:13 PM
Hazel's Avatar Mega Super Mommy
Join Date: Jan 2011
Posts: 2,679
It is wonderful to hear he is doing so well
Mom of S, B, and Iz
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January 5th, 2013, 07:09 PM
kimberley's Avatar Mega Super Mommy
Join Date: Nov 2006
Posts: 2,843
Thanks for sharing, I know someone pregnant with a baby with HLHS.
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