Hypoplastic heart syndrome

For more info on hypoplastic heart syndrome here is a link: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002096/

We choose the 3 step surgeries for Abby. She had the Norwood and was on the vent for a long time. Everyone kept telling us Abby was on life support for a long time. I don't think they expected Abby to live, but here she is today. They had extubated her once, and she failed, second time was a charm! We love you Abby.

Now for your part. If you don't have pulse oximetry testing in your state to screen newborns write your congressmen. Tell one person about congenital heart defects. Look it up if you don't know what they are. Learn something new every day! Tell someone you KNOW someone with a heart defect, and you do! Abby! Get to know Abby, she may talk and walk a little different, but she is just like you and I!

Signs and symptoms to watch out for in a newborn.

Bluish coloring around the lips, feet or hands. There may be some on the chest.

Heavy breathing

Not feeding well. In abbys case she would latch on with breast feeding but couldn't suck. Actually she could, she just didn't have the energy.

If you have a chd in your family history, seek help before pregnancy, and get a 2d ultrasound. Genetic testing should be available, and its better to be prepared then to be totally blindsided. History of a chd can also mean if someone has something as little as a hole in the heart. I didn't know that....so anything that you may think is non essential, do share with your doctor anyway.

Please share my story, and info with all you know. 1 in 100 children are born with a congenital heart defect, and funding is not as much as is pediatric cancers or autism.

Thanks so much for reading.

Until next time.

Carole