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Trying for another baby

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NLEmmett
NLEmmett Community member Posts: 3 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hello, my little girl is nearly 3 she been through so much in her little life from having a difficult birth and then when she was 4 weeks old started having infantile spasms but these were misdiagnosed for nearly 5 months, when she turned 2 she had an MRI which shows she has brain damage in the basal ganglia part of the brain, she has global developmental delay with an unknown neurological condition that the doctors have never seen before and can’t tell us what has caused it and they say we may never find out. She’s had some genetic tests done and so far everything has come back normal they still want to do a little more testing but me and my partner want to give her a sibling, I did miscarry at just 5 weeks about 2 months ago but with my daughter it was such a good pregnancy throughout. I just want some advice from other parents who may have gone through the same thing about going on to have other children it would really help, thank you ? 
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  • woodbine
    woodbine Community member Posts: 11,618 Disability Gamechanger
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    Hi @NLEmmett, its surprising how many people have miscarriages we lost our first at around 9 weeks, we now have 2 who are 32 and 36, it was surprising how many people said at the time that it had happened to them, my ex sister-in-law had 5 miscarriages and 3 kids !. Fingers crossed all goes well.
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  • NLEmmett
    NLEmmett Community member Posts: 3 Listener
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    Thank you woodbine ?
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  • emmarenshaw
    emmarenshaw Community member Posts: 710 Pioneering
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    Hello @NLEmmett welcome to the community. I’m so sorry to hear you’ve been through such a tough time. I’m going to tag @Richard_Scope to see if he can assist you. Know that we’re all here if you ever need our support.
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  • Richard_Scope
    Richard_Scope Posts: 3,648 Scope online community team
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    Hi @NLEmmett, it's good to meet you and welcome. You have really been through it, My wife and I experienced miscarriage 14 years ago but we went on to have our daughter who is 11 years old. I spent the longest time analysing everything. Was it something to do with my Cerebral Palsy?, did I not support my wife enough? etc. 
    I am the oldest of 4 and the only child with a disability. Ultimately, you and your partner need to decide but we will be here to support you.
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  • LexWood
    LexWood Community member Posts: 5 Listener
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    Hey, myself and my partner have been talking about this as we would like another child in the next few years but our baby has an undiagnosed brain condition.
    We have been told that if the condition is inherited via recessive genes from both of us, then there’s a 25% chance a future child would have the same condition. If a dominant gene is responsible then there would be a 50% chance. We’ve been told that if there’s a diagnosis and a test that can be done on an embryo then we might be eligible for IVF on the nhs.
    But I wonder if there is no diagnosis, are there tests for common genetic abnormalities that you could access through an IVF process? Have you enquired about any of this?
    Do let us know how you get on and all the best of luck to you and your little girl!
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome I truly understand the big decision you are trying to make but as everyone has said each pregnancy is different

    I too had a mis carriage at 7 weeks and then went on to have a son 4 years later

    Is there any testing that could be done for you before 
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