Saturday, July 5, 2008

Ethan James


I wanted to start this blog before Baby James is born. He was diagnosed with severe heart defects when I was 18 weeks 2 days pregnant. His amniocentises came back normal. He has Heterotaxy Syndrome, Dextrocardia, Transposition of the Great Arteries compounded with a single ventricle outlet and an Atrioventricular Septal Defect. His surgeon said that when he is born the cardiology team will determine if he has sufficient blood flow to the lungs and to the heart. If he doesn't, he will require immediate surgery if it is possible to correct. We are hoping that he doesn't require this surgery. He will have at least one open heart surgery and more likely he will have three or more before he is four years old. I will update this blog when he is born to let friends and family know of his updates. My scanner is not working so hopefully we can get some pictures straight from the camera.

Update: Richard was able to scan the ultrasound photo. We have more recent ones but this one turned out the best!

4 comments:

kellyclay said...

Amanda,

what a beautiful baby boy. my Family and I will be kneeling down at 8 pm CST to say a prayer for Baby James.

brossettelewis said...

Aww, I love the 4d US. He's beautiful.

Clarissa said...

My name is Clarissa, my daughter was born with many of the issues that your son is facing. I know this can be a very scary time for you and your family. Please feel free to visit her Caringbridge site at http://www.caringbridge.com/visit/emily and contact me at anytime if I can lend a hand. You might also want to check into a yahoo group that is for asplenia ivemarks syndrome that has quite a few heterotaxy children and adults in the group.

jencooper said...

Hi - My name is Jennifer. My daughter, Grace, was born in September 2007. She was later diagnosed with a hypoplastic right ventricle and double inlet left ventricle. Clarissa (who has already posted here) is amazing and will be such a support for you. Please let us know if you need anything!!

<3,
jennifer

www.caringbridge.org/visit/gracecooper