Saturday, January 17, 2009

Duke University Research Study

During my prengnacy I researched alot on Anencephaly. In me research I found a website http://www.chg.duke.edu/diseases/anencephaly.html with information that Duke University is doing a research study on Anencephaly and other Neural Tube Defects. They are trying to gather more information on how these anomolies happen and form, and the causes. The more information we have on them, the better it will be to help women like myself prevent this from happenening to our babies. In the study Enrique and I had to donate blood a few months back, we have to do a phone interview with our family medicak history, and when Elisha was born we had to collect his cord blood and send it to Duke University. I asked the woman doing to study if she would check for any chromosomal problems with my son, because of our past pregnancies I would like to know if there was anything else wrong with him. She said that she would be happy to do a chromosomal check on Elisha at no charge. Then I thought it would not hurt to ask if she would do genetic testing on Enrique and I. She said IF there was something chromosomally out of order with Elisha she will to genectic testing on us both. Genetic testing is VERY expensive and it is something that insurance does not cover, so this is a blessing to us to have done.
With that being said, Elisha had a heart defect he had only 3 chambers. It was called a VSD Ventrical Septal Defect. Which CAN be reason to look for a chromosomal problem...but after he was born and the nurse had checked him, he also had a Cleft Palate. With the two together there is a higher chance that he did have some sort of chromosomal anomoly. I spoke with Duke on Thursday and she said she went ahead and delivered some of his cord blood to LabCorp to check for chromosomal anomolies. As much as I wish I knew if there was something wrong with me having children, I am scared to death for them to tell me I just can't have children. She said I will geg the results back from Elisha in less than 2 weeks, then if there is something they will procede with genetic testing on us. As soon as I find out the results on Elisha, I will post and let everyone know. As always, I ask to keep us in prayer for this news we are going to receive. Thank you to everyone for checking in on us.

10 comments:

  1. I'm so glad that you've found someone who is willing to try and give you some answers. You are an incredibly strong woman, and I really hope you find some answers. I will continue to keep you and your DH in my prayers!

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  2. That is amazing that they are going to do that for you. I will continue to pray for you all.

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  3. You are amazing. My prayers for you continue...

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  4. Shelley,

    I am so happy for you that Duke is going to work with you that is GREAT.

    I will be praying for you that they can figure out how to help your family deliver a healthy baby.

    I too had to have genetic testing and they found the issue that was making me keep having failed pregnancies...I had three until this last one, the positive thing about the testing was this time when I got pregnant the doctors new the steps they needed to take to make sure Hannah was healthy and taken care while inside of me.

    I am praying for you and your have been an inspiration to me!

    God Bless, Rachel (Hannahsmommie WTE Jan '09)

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  5. I am so glad that Duke is going to help you out like that. I pray you get the answer you want and that in the near future you will be able to bring home a healthy baby. I will be sending out the angels hopefully Tuesday since tomorrow is a holiday and its snowing here now anyway. You will continue to be in my thoughts and prayers and i hope to hear from you soon.

    Stephanie
    stephs4thbaby

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  6. knowledge is a wonderful thing. there is and never will be anything wrong with you though in my book, no matter how the tests come back. just as elisha is perfect...you too are perfect. please know this in your heart. you are perfect in every way, shape and form.

    the pictures of elisha and the rest of your family are touching and sooo wonderful to see. i love the one of you all holding hands tightly around one another...this is love. you are love.
    blessings as you rest and recover and await the news from Duke. may your heart be at peace in the wait.

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  7. Bless you and yours for being as strong as you are and for letting us be a part of your miracle and learn from your strength!

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  8. I am so happy that you have someone to help you out in your journey to finding out what your precious angel had. I pray and pray that nothing is wrong with you and that you will go on and have a very healthy baby someday. Thank you so much Shelley for sharing this journey with all of us. Your a strong woman and you have such an amazing family to support you. Just looking at a picture of you shows me UNCONDITIONAL LOVE...i'm proud fo you...

    Rachelle-WTE

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  9. Several of the ladies at the Blessings From Above Website have been in touch with Duke. I know April, offhand, had all the testing. Some chromosomal abnormalarities were found on some of the girls, others I don't know.

    Karen

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  10. Dear Shelly, You don't know me but I am a good friend of your moms. I think you are an incredible person and will make a wonderful mother someday. Thanks for you story. Love, Diane Smith

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