Tuesday, December 29, 2009

A pregnant mom whose baby has Trisomy 18 is looking for information

Alyssa looking very compatible with life, Christmas morning with some of her gifts.
Can you explain T18 in 20 words or less? Neither can I and so I need your help! I just came in contact with a lovely Christian mom, who is currently pregnant with a baby girl diagnosed as having Trisomy 18. We had a long talk and this mom is on the ball with getting informed and preparing for her future little one. Melanie is a well experienced mom but is new to the world of T18. She still has questions and would love some encouragement for this journey.

I didn't know that Alyssa would have Trisomy 18 prior to her birth, so I am at a loss for helping another mom prepare. If you would e--mail me or leave your contact information I will get you in contact with Melanie. They do not have a website/Facebook. Melanie and Micheal's baby girl is due March 19th! So this makes Melanie about seven and a half months pregnant.

Melanie was recently seen by an OB in her practice and she shared with me the following experience:" He was recommended because he had birthed two Trisomy18 babies already.
I soon realized that he had just let them die upon birth and his statements to me are following: We do not need to do a cesarean if "it" has distress during normal labor"it" is not compatible with life and should just be left to die I WAS AND STILL AM ILL TO MY CORE with that Doctor's thoughts..."

Alyssa is 17 months old, my heart is overfilled with the joy that she brings to our everyday lives. I am learning more and more that this T18 community is strong. If you have information that would benefit Melanie and Micheal in their situation, please leave a message here and send along your contact information to me so I can forward it to them.

Thanks!
Posted by at 5:38 PM
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6 comments:

  1. Please, feel free to have Melanie email me. We found out that Lily had T-18 when I was about 4 months pregnant. She will be 8 months tomorrow. My email address is southerngirl72j@comcast.net.
    Jill

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  2. I can provide medical publications that refute the myth of incompatibility.These tend to speak in the language of doctors.
    Please email at anniefarlow@gmail.com

    Barb
    www.anniefarlow.com

    ReplyDelete

  3. Our 6th child was a T18 baby and we had to go from not knowing anything about it to becoming "experts" on the disorder in a very short time frame. We had to face the same kind of comments that this mom faced, thankfully, after much prayer and standing our ground, the Lord put together a good team of Doctors for Michael's delivery.

    We definitely don't claim to have all the answers, but will be glad to share what we know and to help research what we don't.

    Please feel free to contact us at touchedbytrisomy@gmail.com or shaneclements@comcast.net

    You said they don't have a FB page or a website, but do they have web access to send emails?

    Shane Clements
    www.touchedbytrisomy.com

    ReplyDelete
  4. Charlene JordanJun 15, 2010 09:36 PM

    HAD A BABY GIRL BORN WITH T-18 AND SHE LIVED TO BE 21 MONTHS old. Looking at pictures of ALYSSA REMIND ME SO MUCH OF MY BABY "MIRACLE". I HAVE A WEBSITE IN HER MEMORY:Miracle-jordan.memory-of.com I can relate to melanie with the negative outcome from doctors but remember that God is the doctor of all doctors. I truly believe that prayers,love and having a strong will to give our baby a chance at life kept her here with us that long. To all T-18 families keep the faith. There will be days harder than others but enjoy your baby and let them know that they are loved!!!! MY E-MAIL ADDRESS;jordancharlene@att.net

    ReplyDelete

  5. I had a daughter that was diagnosed with trisomy 18 and didnt get the pleasure of meeting her but I think of her all thetime and cry when I read all these updates on different children with the disorder,sometimes it just helps to read these cause it makes me feel better.

    ReplyDelete

  6. I think it is a horrible and very SELFISH decision to put a helpless child through all the pain and suffering with a disorder like trisomy (of any kind). Losing a child is painful, but prolonging agony is even worse. Shame on you all.....

    ReplyDelete

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The Inward Warfare - by John Newtown- Galatians 5:17

Strange and mysterious is my life, What opposites I feel within! A stable peace, a constant strife; The rule of grace, the power of sin: Too often I am captive led, Yet daily triumph in my Head.
I prize the privilege of prayer, But oh! what backwardness to pray! Though on the Lord I cast my care, I feel its burden every day; I seek His will in all I do, Yet find my own is working too.
I call the promises my own, And prize them more than mines of gold. Yet though their sweetness I have known, They leave me unimpressed and cold: One hour upon the truth I feed, The next I knew not what I read.
I love the holy day of rest, When Jesus meets His gathered saints: Sweet day, of all the week the best! For its return my spirit pants; Yet often, through my unbelief It proves a day of guilt and grief.
While on my Saviour I rely, I know my foes shall lose their aim, And therefore dare their power defy, Assured of conquest through His name; But soon my confidence is slain, And all my fears return again.
Thus different powers within me strive, And grace and sin by turns prevail; I grieve, rejoice, decline, revive, And victory hangs in doubtful scale: But Jesus has His promise past, That grace shall overcome at last.