Severe Microcephaly, hemorrhagic stroke inutero

emmapaige
emmapaige Online Community Member Posts: 3 Listener
in Families and carers
Hi my name is Emma and it's my son maximus-theo that brings us here. Max was diagnosed with microcephaly at 26 weeks gestation so they sent us for an emergency fetal MRI the next day. At 28 weeks we received te results of the fetal MRI that confirmed max had had a hemorrhagic stroke inutero that had in turn destroyed both of his cerebral hemispheres to the point they were now none existant. He was given an extremably poor prognosis and they said he would not survive inutero, it's at this point  the hospital basically wrote him of and said that when he was born if he did not take his first breathe on his own they would not intervean with suction or back slaps as they would be fighting a loosing battle so I went home and rang the midwife and we got changed to a different hospital that was willing to help, as time went along and he faught harder than ever we were told when he was born he would not be able to breathe or feed on his own and he would be blind and deaf. We were induced 3 days before my due date so that they could control the pregnancy and everything was going to plan, he was still here and still fighting and before I new it I was in labour which is when a man in a grey coat entered the room (along with 4-5 other medical staff) and removed my partner, a few minutes later my partner re entered the room and was asked to sit in the far corner, I gave birth and my son screamed on his own and was rested on me and then taken down to NICU, it was only a few hours later when me and my partner got talking that he told me when he was removed from the room that all the signs and machines indicated he was dead and he was told he could only be aloud back into the room if he remained out of the way and dident tell me. But max was born on the 9th of December breathing on his own feeding on his own is not completely blind or deaf and will soon be turning 1 in a week's time so we're celebrating his existance and spreading awareness and have come here to get/offer any advise we can and find out if anyone else has anything in common with our story and hopefully make some new friends 

Comments

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hi @emmapaige and a warm welcome to you. Thanks so much for sharing your story, and a very happy birthday to Max when it comes! 

    Please feel free to browse any categories of interest, or head over to the Coffee Lounge for some fun and games :)

    If you ever have any questions, don't hesitate to ask.

    Alex
  • Tori_Scope
    Tori_Scope Scope Posts: 12,468 Championing
    Welcome to the community from me too @emmapaige :) 

    I can only imagine how traumatic that all was, but I'm glad to hear that you and Max both seem to be doing well. Have you received enough support to help you cope with everything over the past year?

    I hope that you manage to connect with some parents who've been through a similar experience here on the community. I can see that you've commented on a few older threads already.

    You may also be interested in looking into Scope's family services. Our Parents Connect service may be of particular interest to you :) They're a super friendly team, so please do get in touch with them if you think they could help. 

    Do you have anything nice planned for Max's birthday? 

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