Trisomy 18 (Edwards Syndrome) Support Group

Trisomy 18 or Edwards Syndrome is a genetic disorder. Edwards Syndrome can result in characteristic physical abnormalities and significant developmental delays. For this reason a full-term Edwards syndrome baby may exhibit the breathing and feeding difficulties of a premature baby.

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  • drewphillip

    Kaelyn Brooke Partial Trisomy 18

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    My daughter Kaelyn Brooke was born on September 2nd, 2015 @ 12:56pm. She has partial Trisomy 18 (Edwards Syndrome). She has exceeded everyone's expectations and is doing extremely well. I would like to invite everyone here to read about her. I have a website created for her http://www.kaelynbrooke.com Here you can follow her life since day one and how she has progressed. There is also a sign up...
  • deleted_user

    Trisomy 18

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    My husband and I lost our first child to Trisomy 18 complications on March 5th 2013. We found out we were having a girl and that she was dying at the same time. The first Ultrasound was on Valentine's Day and even though the doctors saw cysts on her brain and deformities in her head and body, they said nothing. We were told that they didn't get enough pictures so they wanted us to come back in a...
  • deleted_user

    25 weeks pregnant, son just diagnosed

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    I am six months pregnant and just found out two weeks ago that our son Jake had Trisomy 18. We have a healthy 17-month old daughter and have no idea how this could happen. I am really struggling. I am active-duty military and am lucky to have comprehensive medical care for us both, but because of the military regulations and the state we live in barring late-term abortions unless the mother's...
  • deleted_user

    Just Diagnosed with T18

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    Hello all,We are new ot this board, my wife went for 12.5 week NT Scan which showed fluid behind the neck to be at approx 8mm we then performed a CVS which "pRELIMINARY" CAME BACK AS POSITIVE FOR T18. The MFM stated they are waiting for one more result for the final but we feel we are being rushed by the Dr's to lean towards a decision obviously they are leaning to terminate.My wife and I would...
  • deleted_user

    Baby Eden

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    Hi! Eden a friend of ours' daughter. She was diagnosed with full T18. The doctors told her family that she would not live more than a week. I am happy to say she is 5 months old! She was born 1 week after my son and they stayed in the NICU for awhile at the same time. http://www.facebook.com/OurFullT18MiracleBabyEden
  • deleted_user

    False Positives

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    Hello,I am new here. I recently had Harmony testing and my T18 came back positive. I am 38 years old. I was oriignally pregnant with twins and miscarried one at 8 weeks. Of course I had no idea what that meant so I instantly started reading. And of course, you get 50 different answers. I thought it would be best to ask the experts...the parents who have expereinced the fear of going through...
  • deleted_user

    Loss of child with Edwards Syndrome

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    I lost a child with edwards syndrome in july 2008, but decided to terminate after learning of the prognosis from the doctors. We came to this decision as we did not want our child to suffer any more. I have regretted this decision ever since and feel I was bullied into the decision from the doctors and family members. I miss my baby matthew every day since and gave him a resting place to show...
  • deleted_user

    i want my baby back

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    i would have been due soon. Infact they would have induced me by now because the thought she had a problem with the umbilical chord so they would have brought her out by now. The chord was thickening so they told me to hang to her for another 8 weeks, i didn't make it to 2. She died there inside of me. I knew they second the nurse was struggling to find the heartbeat. I'd been waiting for that...
  • deleted_user

    My God Daughter has Trisomy 18.

    The parents are in denial and can't wait for their baby to come home. I've been reading up on this Syndrome as much as I can. They don't understand what the doctors are telling them. They think the doctors don't want to treat her and let her die. We can't give up on this little one, but we have to be realistic that she might not make it. Reading some of these entries have made me feel better...
  • deleted_user

    Screen for Wilms and Hepatoblastoma

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    Hello everyone,I have a 16 month old daughter who has Trisomy 18. She is doing relatively well considering her diagnosis. There are a few of us out there who are lucky enough to have our T18 children survive past 1 year old. I keep searching for answers to best help my daughter stay alive. I question things I need to look out for and I would advise the others to do the same. One question I...
  • deleted_user

    Missing my baby boy

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    Jed was born sleeping early April. He was 21wks, 6days. We had grappled with our decision for 2 weeks since our 20 week scan found several things wrong with him. We came to our decision to let him be at peace when it clear he was very sick. We would be waiting for him to die. :(The morning we arrived at hospital we were told our amnio had found he had full Trisomy 18. After all of my research...
  • deleted_user

    Help with grief of losing our daughter

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    Hi, I am from the UK, am 42 and have 2 great teenage sons, 2 great step-kids and a wonderful husband. Had the 2 boys within short space of time when I was in my early 20's at Winchester hospital and after a difficult time with relationships eventually met the love of my life on-line and we decided to try for a baby before it was too late! We were lucky and got pregnant after 3 days of trying.We...
  • deleted_user

    Help with grief of losing our daughter

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    Hi, I am from the UK, am 42 and have 2 great teenage sons, 2 great step-kids and a wonderful husband. Had the 2 boys within short space of time when I was in my early 20's at Winchester hospital and after a difficult time with relationships eventually met the love of my life on-line and we decided to try for a baby before it was too late! We were lucky and got pregnant after 3 days of trying.We...
  • Hi, I am from the UK, am 42 and have 2 great teenage sons, 2 great step-kids and a wonderful husband. Had the 2 boys within short space of time when I was in my early 20's at Winchester hospital and after a difficult time with relationships eventually met the love of my life on-line and we decided to try for a baby before it was too late! We were lucky and got pregnant after 3 days of trying.We...
  • deleted_user

    The perfect storm

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    My girlfriend, Emily, and I were pregnant with our first child when she was diagnosed with trisomy 18 and we decided to have an early induction at 5 months which was this past February. We, as a couple, have not been doing very well as of late. There are some unique and complicated circumstances that have and are continuing to create some heavy collateral damage to our relationship. Before I tell...