Recently I have had a huge reality check. Huge. My baby girl has a congenital heart defect. She survived a surgery. She is home and doing well. But it all could have been so different.
The reality of it is, that one out of ever one hundred babies are born with a congenital heart defect. Our Mylah Leilani was that one. And heart defects are the number one cause of birth related infant deaths. More babies die from congenital heart defects than cancer. And yet, there is more research and money donated to childhood cancer research than congenital heart defect research.
Unfortunately anyone can have a baby born with CHD and there are no known causes, cures, or preventions for CHD.
How can you help? Create CHD Awareness, donate blood, become an organ donor, and help support CHD causes by donating time and money to research. The American Heart Association is a good place to start!
This is what we live with daily. A baby born with CHD. Though Mylah has come through her first surgery and is thriving well at home, there could still be complications. She is a fighter, she is our little hero, and she will become a survivor of CHD. For now all we do is count our blessings and find relief in knowing that our Heavenly Father charts our course. He has all control. And it is up to Him what Mylah's path will be. We are blessed with this comfort and knowledge.
Mylah for now is doing so well. I am in awe daily at the miracle that is called a BT Shunt. Modern medicine made it possible for our baby girl to be home with us, growing and developing without the noise of a hospital environment. Miracle indeed.
My days at home are sometimes hard, tiring even, but nothing is worse than imagining a life with out the sleepless nights, crying baby, and poopy diapers. She is living the normal newborn life, and we are living the chaotic, family of five life. For that I am grateful.
- Lara
The reality of it is, that one out of ever one hundred babies are born with a congenital heart defect. Our Mylah Leilani was that one. And heart defects are the number one cause of birth related infant deaths. More babies die from congenital heart defects than cancer. And yet, there is more research and money donated to childhood cancer research than congenital heart defect research.
Unfortunately anyone can have a baby born with CHD and there are no known causes, cures, or preventions for CHD.
How can you help? Create CHD Awareness, donate blood, become an organ donor, and help support CHD causes by donating time and money to research. The American Heart Association is a good place to start!
This is what we live with daily. A baby born with CHD. Though Mylah has come through her first surgery and is thriving well at home, there could still be complications. She is a fighter, she is our little hero, and she will become a survivor of CHD. For now all we do is count our blessings and find relief in knowing that our Heavenly Father charts our course. He has all control. And it is up to Him what Mylah's path will be. We are blessed with this comfort and knowledge.
Mylah for now is doing so well. I am in awe daily at the miracle that is called a BT Shunt. Modern medicine made it possible for our baby girl to be home with us, growing and developing without the noise of a hospital environment. Miracle indeed.
My days at home are sometimes hard, tiring even, but nothing is worse than imagining a life with out the sleepless nights, crying baby, and poopy diapers. She is living the normal newborn life, and we are living the chaotic, family of five life. For that I am grateful.
- Lara
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