Ava~ Hope for Congenital Diaphragmatic Hernia.: Congenital Diaphragmatic Hernia Survey

Showing posts with label Congenital Diaphragmatic Hernia Survey. Show all posts

Saturday, April 25, 2009

Attention CDH parents.

Hello! I have been asked to help spread a CDH survey around the Congenital Diaphragmatic Hernia community. This is very important. As you all know I have a passion for CDH related projects. So when I heard about this survey I was happy to share it with you all. If you would, please add it to your blog or carepage so that they can get a huge response.

Here is the survey web address......

http://www.zoomerang.com/Survey/?p=WEB2294UN58QEU

I thank you in advance.

~Terri

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A Congenital Diaphragmatic Hernia

Hello and Welcome Ava's Blog.

My goal to is educate and bring valuable information to the people that need it the most. If your baby has been recently diagnosed with a Congenital Diaphragmatic Hernia or you know someone who has gotten the devastating news, please know you are not alone. Yes this is a very serious, life threatning birth defect yet there are those that do survive... Please let Ava give you Hope.

If your baby was born with Congenital Diaphragmatic Hernia and has recently reherniated (the diaphragm needs repaired) I have experience with this as well. Stay strong as this too is a very tough fight.

Ava's journey has been quite the ride. My Hope is that you find comfort knowing that not only do CDH babies survive but they can also thrive even after all the obstacles their bodies are put through.

"Carry Hope with you ALWAYS!"

~ Terri L. Helmick

What is Congenital Diaphragmatic Hernia? (CDH)

A diaphragmatic hernia is a birth defect in which there is an abnormal opening in the diaphragm, the muscle that helps you breathe. The opening allows part of the organs from the belly (stomach, spleen, liver, and intestines) to go up into the chest cavity near the lungs. Also forcing the heart to move.

A diaphragmatic hernia is caused by the improper joining of structures during fetal development. As a result, the abdominal organs such as the stomach, small intestine, spleen, part of the liver, and the kidney appear in the chest cavity. The lung tissue on the affected side is thus not allowed to completely develop.

Congenital diaphragmatic hernia is seen in 1 out of every 2,500 live births.

Ava's Fetal MRI Results (May 2006)

Fetus is 23 weeks, 6 days and an estimate weight of 638 grams. Amniotic fluid is 21.2 which is in upper range of normal. Fetus has Left Congenital Diaphragmatic Hernia containing the stomach, intestines, and a relatively large portion of the left lobe of the fetal liver. Heart is moved to the right. The calculated lung to head ratio is 1.3-1.4 after multiple measurements of the right lung. The best measurement of the right lung is 1.6 x 1.7 x 3.9 cm, with a volume of 5.5 cc. A small portion of the left lung is identified within the left apex and measures 1.9 x 1.4 x 0.8 cm with a volume of 1.1 cc. There is no other fetal anatomic abnormalities.

"My CDH Journey"

I've been told I'm a brave little girl. God has blessed me and my family beyond measure. My Mommy feels lucky that I'm still here with them. I hear I have touched so many lives.

This is my story. I am told I am a Miracle. I am!

(My mommy loved this song as a child. She told me it fits my story.)

"I'm something Special I'm the only one of my kind God gave me a body and a bright healthy mind. He has a special purpose that he wants me to find so he made me something special I'm the only one of my kind."

I would be honored if you read my whole story. You can find it at http://www.carepages.com/ avahelmick. Hold on because it is filled with ups and downs. Mom and Dad says it was quite the roller coaster. I not only survived CDH once, but twice. Thanks to all who read my story. God Bless.

~Ava Elizabeth

Welcome to Our Life with CDH.

Our daughter Ava was born with Congenital Diaphragmatic Hernia. CDH is when (inside of the womb) the diaphragm does not form properly. The abdominal organs move up into the chest cavity, compromising the heart and lungs. Fifty percent of CDH babies die. Sometimes with proper diagnosis and treatment, the babies have a better chance at birth.

We held our First Annual, "Ava's Awareness Walk" on March 27, 2008. I was so touched at how many family and friends came out to walk for CDH Awareness. I held back tears as I spoke about Ava's friends that have died fighting this birth defect. I played the song, "Little Angels" that Tamra (my sister) and I created for all the CDH babies. After walking around the beautiful lake we had a balloon release. I did it to remember all the precious angels that had been taken, far too soon, from their Mothers arms. They will forever be in our hearts.

My goal is to educate and provide valuable knowledge and information about Congenital Diaphragmatic Hernia. I want to let as many know of this deadly birth defect as possible and to share HOPE.

Miracles DO Happen!

Faith and Trust in God.

I was comforted many times by Bible verses.

"In ALL thy ways acknowledge Him and He shall direct thy paths." -Proverbs 3:6

"We can do all things through Christ." -Philippians 4:13

"All things work together for the Glory of God."
-Romans 8:28

"Unto thee oh Lord do I lift up my soul." -Psalms 25:1

"Come to me, all you who are weary and burdened, and I will give you rest." -Matthew 11:28

"I truly believe we are handed things in life to make us become better and stronger people. I have learned more about life from little Ava than I have in all my years. I adore all my girls but I will always thank God and Sweet Ava for making me appreciate life to it's fullest!" -Terri Helmick

Hope for CDH.

Saturday, April 25, 2009

Attention CDH parents.