Hi, my name is Gracie Milan, and I was born on April 17, 2003. My parent's names are Denee' & William. I was born with a special heart...I had a very serious congenital heart defect (CHD), called Hypoplastic Left Heart Syndrome (HLHS).
What is hypoplastic left heart syndrome?
Hypoplastic left heart syndrome (HLHS) is a serious problem that involves several parts of the left side of the heart. It is quite rare and occurs
in about 1 out of every five thousand babies born. In the United States,
about 1000 babies with HLHS are born each year. Two thirds of the babies affected are boys. Most babies with HLHS are otherwise healthy, but some have other medical problems including other heart problems, neurologic problems, and Turner's syndrome.
In this condition, for unknown reasons, the left side of the heart does not develop properly while the baby is in the mother's womb. The parts of the heart that are usually affected are the:
mitral valve (1), the left ventricle (2), the aortic valve (3), and the aorta (4)
In the normal heart, red blood returning from the lungs, flows from the heart's left upper chamber called the left atrium through the mitral valve to the left ventricle where it is pumped through the aortic valve and out to the body. In babies with HLHS, the left side of the heart is underdeveloped and cannot pump enough blood to meet the body's needs.
Without treatment, 95% of babies with HLHS die within the first month of life. Treatment means either three heart surgeries during the first two years of life or a heart transplant. Due to dramatic improvements in surgery and medical care, many children born with HLHS now do very well. However, these treatments involve many stressful experiences and risks. The treatments are not a "cure" and the children will need expert medical attention for the rest of their lives.
This is why I need your help. We, the parents need help, we are staying 2-3 hrs
away from home and we do not have any income coming in
and we still need to pay our bills while we are here, eat and get around.
Our home is in Myrtle Beach and we have rent, all other bills that can't be
stopped or we will not have a home to go back to when
Gracie gets out of the hospital.
We wouldn't ask for donations if it wasn't necessary!!
To donate, click on the donate button below. Also, please email my mommy,
when she get's a chance, I am sure she will email you back. Also, sign our guest book so we know you were here. Plus, visit my other stuff on my site.
* Story will be updates on how I am doing.
For those who donate, we will add your name to our special thank you wall.
Much love,
Gracie's HLHS Message Board
Gracie's Smile Quilt
Gracie's Quilt of Love
UPDATE:
Oct 20, 3003- We are at the Ronald
Mcdonald house. Gracie has her surgery Wed, all her
pre-op is tomorrow. This is her 2nd surgery.
She weighs 13lbs 5oz and she is 26 in long,
she is holding her own bottle now, it is too cute. She
has not rolled over yet and she won't stand ---she just
won't use her legs!!!
Oct 23, 2003- Gracie's surgery went really good,
they took the vent out and they are just trying to
control her pressure, it is a little high. Also
they had to give her oxygen, her stats were a little
low. She opens her eyes a little, but she is in a lot
of pain still. She sees her mom & dad and she starts
crying wondering why we can't hold her, but hopefully
we will not be here much longer...
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