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

Let's have heart giveaway

This is for you heart moms and kids. I am looking for donors, but I also need heart moms and kids too to give the goodies away to! I have a few, but I want this to be an annual thing. Let's give heart giveaway is about giving back to the chd community. I know what it is like to be a heart mom, I have Abby. Abby has HLHS. So I am asking heart moms to contact me by leaving a comment in my blog to be entered in my givewaway. MAKE sure you leave contact info, so I can give you your goodies. My blog is http://abbyandfriends.blogspot.com ONLY for congenital heart defect families.



Also I have moms that I am friends with online that want to donate gently used closed to heart moms in need. If you are, let me know by messaging me or leaving a comment in my blog!





Donations for the giveaway will get a button on my blog http://abbyandfriends.blogspot.com I am really excited about this. If you know of any businesses, or are a rep for something and would like to donate let me know. Also some of my ladies who are donating prizes want to know, what is it heart moms and kids would like for National CHD day. Feel free to leave a message at cafe mom, my email, ning, my space or any way. Thanks so much heart moms for all you do! You are truly heros!



Carole Harris

mom/nurse/heart mom to abby 10 yo, HLHS

writer, blogger, social media networker



Prizes will be given away during the week of Feb 7th through 14th, and I will be following up to make sure everything goes smoothly!

Have a broken heart?

Hi everyone! This is my congenital heart defect blog! Do you know what a congenital heart defect is? Let me explain. It is the number 1 birth defect. 1 in 100 births result in congenital heart defects, and there is no known cause. It is a silent killer. What is a congenital heart defect?
Congenital heart defects are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware that she is pregnant. Defects range in severity from simple problems, such as "holes" between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves. (information obtained from American heart association)

#1 Cause of death under the age of 1
There are 35 types of congenital heart defects




12 Canadians are born each day with a congenital heart defect

180,000 The estimated number of Canadian adults and children with CHD. Many babies go home undiagnosed, only to die silently in their cribs. The lucky ones get diagnosed as adults. The teen that collapses on the basket ball court from heart problems may have had an undiagnosed congenital heart defect. While autism is a new diagnosis in kids, it is still more visible then congenital heart defects. a Congenital heart defects have less funding for research than pediatric cancers and pediatric aids. Congenital heart defects have less celebrity attention than pediatric cancer which means less "LOUD" exposure. What is "LOUD" exposure. Let's face it, when you have Robin Williams pitching for your cause, you stand up and notice.

There is hope, there is something you can do. Congenital heart defect day is Feb 14th. You can tell one person what a congenital heart defect is. If you tell one person, they can tell one person and so on. You get the drill. In Illinois, it is a national day, in other places it is a week. My theory is every day is learn about congenital hearts day. We can never do too much for our small brave heros. They are the true heros as well as the moms, dads and grandparents who take care of them. Learn about congenital heart defects and spread the word. Abby has a congenital heart defect. Let's talk!