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Thread: Trisomy 13

  1. #1

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    Default Trisomy 13

    In April of last year I had a stillbirth at 24 weeks. I didn't know anything was wrong until I had my ultrasound and abnormalities were found. My husband and I were devastated. We were sent for diagnostic testing which showed our baby had Trisomy 13. I had never even heard of Trisomy and was told by doctors that it was not likely our baby would survive. Knowing this I thought I was prepared for the loss of our baby boy but I was very wrong. I still grieve for him now, but five weeks ago I gave birth to a beautiful healthy baby girl Isabella. Throughout my pregnancy with Isabella I was very scared of losing her too, and even after ultrasound and knowing she was alright I wasn't at ease until she was born.


  2. #2

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    Trisomy 13 is quite rare about 1:10,000 birth. If the baby is born alive then about 80% will not survive the first month.
    If you really want I can tell you what deformities are caused by this but a warning they are quite nasty.

  3. #3

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    Thank you for your reply. Emmanuel had many deformities, four fingers on one hand and four toes. Cleft palate, facial, heart and many others.

  4. #4

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    its hard to see babies being born like that , someone very close to me had a baby with hydrocephals, It was very sad and passed an hour after birth , there is a photo of him at mums and i always go see it each time i am there , and i say a prayer ...
    do you do the same for emmanuel ??

  5. #5

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    I have a memory box for Emmanuel with photos and clothes but I have only opened it twice in 18 months. I find it too hard to look at him. I also pray for him all the time. I hope it gets easier because I want to be able to look at his photos and momentos but I don't know why I cant. I do know that if I didn't have him we wouldn't have our beautiful 5 week old baby girl, who was born healthy and who gives us so much joy.

  6. #6

    Default

    it hurts ... but he is your angel , even if you cant look at his belongings , take heart knowing he is right by you , as your angel watching out for you

    :hugs:

  7. #7
    Trueladyaja Guest

    Default I lost my Trisomy 13 Baby on Christmas

    Hello,
    After losing your first baby to Trisomy 13 did your Doctor recommend that you see a specialist before getting pregnant again? I am 29 and have had three miscarriages in the past 14 months, my Obgyn has suggested that I go to a specialist with I will do but I wanted to find out about how other mothers have handled pregnancy's after a loss like this. After my last loss my insurance covered the necessary tests to find out what was wrong with the baby but we will have no way of finding out about the other two. I am really afraid that there may be something wrong with me or DH and that we may never be able to have children. What makes it worse is that we are high school sweethearts who have been married for almost seven years so people are constantly asking when I am going to have children and warning me not to wait till I get too old! Uh! If it were just that simple. I don't think that people realize that everyone can't get pregnant whenever they want.

  8. #8

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    Hi hun,
    Sorry to hear of your loss. DH and myself went to see a genetic counsellor who told us that Trisomy 13 is not genetic and we have since had a beautifull healthy girl. Have hope, I know it is hard and very scary. Trisomy 13 is quite rare, 1/10,000 I think so we were the unlucky ones.
    If you have any questions at all ask away.
    Take care,
    Dianne

  9. #9
    Trueladyaja Guest

    Default Thanks

    Thanks so much for sharing your story, I was thinking about giving up on having my own child. My Dr. recommended that I see a specialist. Did your Dr suggest the same before you concieved your baby girl? Did your Dr ask that you do anything special? My OB GYN wants me to see the specialist before we even try again. Your story gives me hope to concieve a child dispite my past
    Thanks again,
    Adrienne

  10. #10

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    Hi Adrienne,

    We never went to see a specialist only the genetic counsellor. Once we were told Trisomy 13 isn't genetic (but we were told by two doctors at our local hospital that it was genetic) we started trying again. I think it is so confusing as there are many Trisomy's like Trisomy 18 & 21 and I think that there are some that are genetic related.
    If it is not too painful can I ask how many weeks you were and how the Trisomy 13 was picked up.
    I don't know anyone else who has dealt with Trisomy 13, so I am so glad we can share our stories.
    Keep in touch,
    Dianne

  11. #11
    Trueladyaja Guest

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    Hi Dianne,
    I was 11 weeks but the US showed that the baby stopped developing at 8 weeks. My other loss was not spontaneous and I wanted to let my body pass the baby on its own but it never happened I had to have a D&C so with the third MC my Dr recommended that we schedule one and my insurance covered testing the tissues to see what was wrong. It is strange because I used to talk to the baby every morning and every night before bed. A couple of weeks before I stopped feeling connected to the baby, I really felt something was wrong but I was trying to stay positive until my next US. Recently I have decided to start a weight loss program and see a specialist to find out what they recommend my next step be. I don't think that my weight is a cause but I do think that if I am more fit I will have a healthier delivery that requires less intervention. I don't want to end up with gestational diabetes or hypertension.
    -Adrienne

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