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  1. #51
    Allymumtobe's Avatar
    Allymumtobe is offline Winner 2012 - Most Optimistic Poster
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    Default Has anyone kept their edwards syndrome baby?

    Quote Originally Posted by calpheepip4 View Post
    Hi Ally

    A mum on another chat group directed me to your post here.
    I have 4 children and my youngest daughter is 13 months old and has trisomy 18 or Edwards Syndrome but she has the mosaic form.
    Our initial diagnosis came from our nuchal scan and blood test - the scan was perfect the nt thickness was 2cm which is great. She had a three vessel cord and nasal bone present. My blood work combined with my age gave a risk of 1 in 15 for Trisomy 18 (Edwards Syndrome). We had an amnio and our FISH results came back perfect! Ten days later our full result showed 8 out of the 15 cells cultured with the third copy of the 18th Chromosome. So a mosaic result.
    To cut a long story short our daughter was born in November 2011 at 38 weeks due to IUGR and was 3lb 14oz (1.7kg) and perfect! Everyone assumed it was a placental mosaicism. We stayed in hospital for 2 weeks due to my high blood pressure and her small size and she came home at 1.780 kg.
    At 6 months we had her blood tested and the result was 154 out of 200 cells showed the third copy of Chromosome 18 so 77% mosaic. She is perfect though still small (6.8 kg at 13 months old) and is sitting but not yet crawling. My son didnt walk til 18 months so I am not too worried! She breastfeeds and eats solids and sleeps well and is just gorgeous.
    Please pm me if you would like to chat and I would suggest having a look at Soft USA (Trisomy.org), Trisomy Advocacy Group, Hope for Trisomy and Living with Trisomy 13 (this has info on t18). Plus there are heaps of groups on facebook both private and open - Trisomy Families, Hope for Trisomy, Soft USA, Soft Australia - heaps!
    Please do not look at the Trisomy 18 Foundation website - that lady is not popular in the Trisomy community and really does not show a positive life with Edwards Syndrome I am sure that statistically the info may be correct but in the USA because of their health insurance and lack of medicare Trisomy 18 babies and children are denied life saving surgeries for heart conditions that are found in typically normal children who do get the surgery and often these babies are not given life saving procedures at birth such as oxygen etc.
    Sending you lots of love and strength
    Colleen xx
    Thank you for your post! I'm mostly in the app and it won't let me pm you could you please pm me?

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    KaraB  (12-01-2014)

  3. #52
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    Default Has anyone kept their edwards syndrome baby?

    Hi I think I have Pm'd you - it's tricky to work this site out! Xx

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    Default Has anyone kept their edwards syndrome baby?

    I just read through all the previous posts and read lots of amazing stories I love that people have recommended the Soft USA site and trisomy families on Facebook.
    I have to say that I hate the incompatible with life label that trisomy 18 and 13 have. They are incompatible with life mostly because they are denied life saving surgery. Why won't drs do heart surgery and feeding tubes on these babies if they need it? Lots of chromosomally normal children have heart surgery, vents and feeding tubes.
    My husband and I agreed that we would make the drs and hospital do what they would do for any typical child including oxygen, feeding tube, cpap, vent etc fortunately all she needed was the feeding tube for 7 days also we could only go on what we could see on her ultrasounds which was a perfectly healthy baby and we dismissed the test results
    My heart goes out to you and everyone - it is such a heartbreaking scary time xxx I reread my post and hope I am not being too zealous but obviously trisomy 18 is a subject very close to my heart xxx

  5. #54
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    Default Has anyone kept their edwards syndrome baby?

    I didn't know that they wouldn't want to give Bub a feeding tube. Hubby and I want everything a normal baby would get but we aren't sure on big surgeries we don't want to prolong any pain if baby isn't doing well as he doesn't have mosaic. We think we are going to go as far and we think Angus can go. If he passes away it will be in his own time we just can't bring ourselves to end the pregnancy especially while he in his ultrasounds is very active, heart looks good etc but we are preparing for the worst and have started to look into funeral planning etc so when/if he leaves us we don't have to go through all the painful details then.

    The hospital have been lovely and have given support for any direction we want to head switching us to the sick baby specialist unit and closer to our due date we will get to meet with a pediatrician and the nicu team so there will be no strangers touching my baby. But his prognosis is still that we should only expect a few hours or a few days max with out little one before he goes back to god.

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  7. #55
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    Default Has anyone kept their edwards syndrome baby?

    Quote Originally Posted by calpheepip4 View Post
    Hi I think I have Pm'd you - it's tricky to work this site out! Xx
    Says you've chosen not to receive pm's or your unable to? Grr this darn iPhone app

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    Default Has anyone kept their edwards syndrome baby?

    Bless you. What a hard choice. I'm glad you have chosen this way. Better than dealing with all the what ifs later in life plus you will have him longer.

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    calpheepip4  (09-01-2013),KaraB  (12-01-2014)

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    Default Has anyone kept their edwards syndrome baby?

    I will try and fix up my pm thing.
    Sending you love. Your hospital sounds lovely - mine were great too mostly it's a USA thing with the denying of life saving surgeries. And that is where the statistics on the Internet sites come from. I know of at least 7 children in Australia with trisomy 18. I don't know why some babies do better than others health wise. Honestly my heart breaks for you - I remember how it can feel xxx

  12. #58
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    Default Has anyone kept their edwards syndrome baby?

    Double post

  13. #59
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    Default Has anyone kept their edwards syndrome baby?

    Thank you! I'm glad the hospital is playing ball too

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    Default Has anyone kept their edwards syndrome baby?

    I have been following this thread and wanted to send you much love and luck Ally. I too would have chosen the path you are taking. I truly hope your bubs beats the odds and wish you all the best xxxx

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