Sharing some information!

Tanya · **Posted:** Wed Sep 19, 2007 12:49 pm

Ok, well as you all know my daughter was born with a birth defect called Congenital Diaphragmatic Hernia, a very serious birth defect that affects 1 out of 2500 births. Chances of survival are 30-40%, however it all depends on the severity. Well with my daughters case she only had 1/2 a diaphragm and so her odds weren't so good. My daughter was connected to ECMO (heart lunch bypass) at 24 hours old, ECMO is only used in severe cases and unfortunately that included my Naudya Jo. She was on ECMO for 9 days, and it didn't save her because ultimately nothing could have, they don't think she would of made it through surgery if she was to have had it done. SOOOOOOOO anyways.

I found a support group called Breath of Hope it is only about Congenital Diaphragmatic Hernia, I found it when our daughter was diagnosed. However, it wasn't nothing major just a group, well since then they have become bigger and are now considered a non profit organization. However, now they are working on getting March 31 of each and every year, Congenital Diaphragmatic Awareness Day, so far 1 state has this day recognized as CDH awareness day and that is Mississippi. I am in the process of receiving the information I need to make Kansas the next state to recognize this horrible birth defect, because sadly very few people know about it. I am a nursing graduate and until my daughter was diagnosed I had never heard of it.

I guess my good news is I may be helping make this defect known and if I can help out a family who has been diagnosed it would be the best thing I could do. So I will keep everyone updated.

Tonya · **Posted:** Wed Sep 19, 2007 12:54 pm

Tanya....

That is wonderful!! I'm very proud of you for wanting to make more people aware about this birth defect. I know that you'll succeed in whatever you are doing with this. I know that this will make Princess Naudya so proud of her mommy!!!! Way to go Tanya!!!
What a blessing it will be when every single state recognizes this day!!!! If there is anything that I can do to help spread the word, please let me know. I would be honored to help in any way that I can.

Jo Ann · **Posted:** Wed Sep 19, 2007 1:50 pm

Dear Tanya,
I am so sorry you lost little Angel Naudya Jo this this disease. You will helping educate the public and helping other bereaved parents. That is a noble and honorable legacy for your sweet Angel Naudya Jo.
Love to you,

Tanya · **Posted:** Wed Sep 19, 2007 2:39 pm

Well my letter is typed the info is ready to be mailed off. I am so nervous and probably will be for the next 6-8 weeks, since that is about how long before I find out anything. I will let ya know.

Lynda · **Posted:** Wed Sep 19, 2007 3:07 pm

Dear Tanya,
I am also so very proud of you! More importantly Naudya-Jo is proud of you giving your time and your heart to help other families with something that has and will always affect you for the rest of your life. I want you to know that you have helped me in becoming aware of Congenital Diaphragmatic Hernia, because I had no idea before meeting you and your precious angel. In turn, I will now be able to direct anyone I meet that has had this affect their family to a wonderful Mommy (you) who will be able to help. Let us know if there is anything we can do to help you.
Hugs,
Lynda

Barbara · **Posted:** Wed Sep 19, 2007 6:44 pm

Tanya,
Good for you!I'm sure Naudya is very proud of her Mommy right now!
My prayers are with you,
Barbara

Susan · **Posted:** Wed Sep 19, 2007 7:40 pm

Dear Tanya,

That's great ~ what a wonderful thing to do in your sweet baby girl's memory.

Wow!

Love,
Susan

Cece · **Posted:** Wed Sep 19, 2007 10:47 pm

Way to go Tanya!!!! I was aware of this rare birth defect, because in 1989 I was working in a L&D unit at our local hospital in Illinois. The little girl was airlifted to St Louis, but I never heard what happened to her. I know that this can occur in various degrees of severity. I even read, once, about a case where it was discovered early and they operated on the fetus and was able to save that baby. I think that having people become more aware of this defect may ultimately lead to earlier diagnosis and treatment.

Cindy · **Posted:** Wed Sep 19, 2007 11:52 pm

Tanya, what you are being a part of is so special. I believe it will someday play a big part in sparing the lives of other children. What an awesome way to honor your sweet little Naudya Jo. I know she must be so proud of her mommy.
I also think that as wonderful as it is that it is probably a very hard thing for you to do right now. Knowing that good will come from this is a blessing but I know your heart must be crying out...What about my baby girl?! I believe sweet Naudya Jo as well as the Lord is smiling down upon you and will give you the strength you need every step of the way. Please know that I am lifting you in my prayers. May the good that comes from this bring much healing to your broken heart.
Love, Cindy

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