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  • I thought I'd share my story...

    Hi all, I am currently 8 weeks pregnant...
    This pregnancy was not planned...but my partner and I were over the moon!!
    I have a problem :
    I have SEVERE epilepsy....any one of my seizures could KILL the child..
    I have blank out seizures and motor seizures (I can walk down a street a seizure or something...very dangerous)
    I was due in last Wednesday to have much planned brain surgery....to fix my seizures...they wouldn't operate due to the babies life and any radiation could cause defects...
    I'm having 3-4 seizured a week..
    This week I've had 9 due to stress...
    my neurosurgeon, neurologist and doctor have all recommended I terminate the baby for my medical needs and for his/her safety.

    I'm booked in on Monday for the termination.

    I'm in so much heart break... I can't even tell you.
    2 years ago...I was seizure free...I fell pregnant....had a miscarriage at 9 weeks...
    I got a brand new kitten to mother exactly a year later to the day for help.....I was younger and not as ready...
    But this... I haven't stopped crying since I found out last Wednesday

    :-(

  • #2
    I'm so sorry .... I have been trying for a year to get pregnant ... I couldn't imagine how u must be feeling .... I know it must be so hard and probably hard to beleiev this is happening to u ...
    Did the doc say that after you have this surgery, you will be better and able to have a baby again ? And how long would recovery be ?

    I feel for you big time, your in my thoughts xxx goodluck



    Sent from my HTC Incredible S using Bubhub

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    • #3
      Thanks so much! Much appreciated!!!!!

      They haven't spoken much of it or my future surgery, they just want me to get through one things at a time... :-(

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      • #4
        I'm so sorry miss skittles, what a terrible thing. I truly hope they will tell you that you can conceive and carry without problems after the surgery. Wishing you lots of strength xxxx

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        • #5

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          • #6
            Hey miss skittles, I have read a few of your posts. It seems like you have not had things explained clearly to you about ttc in the future, sounds a bit slack on your doctors part! Why would you be exposed to radiation during neurosurgery? I am a nurse and this sounds pretty unusual given many people undergo surgery whilst pregnant without any probs for the baby? If you are going to have to terminate wouldn't it be better to have the surgery first and then only terminate if it has caused probs for bub? I don't want to cause you anymore grief but it just sounds like an odd way to proceed, terminating because there could be problems rather than because there are problems. There are anti-epileptics that are safe during pregnancy too, have they discussed these options with you?

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            • #7
              That is a good point also a lead vest perhaps over your lower abdomen to protect the baby?.. You may have a lucky bub that is fine or you may not but atleast then you know 100% it had to happen which may make it easier to process .

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              • #8
                Have you seen more than one doctor/specialist for an opinion?

                A good friend of mine is a severe epileptic, she was managed very closely during her pregnancies and has since had 3 healthy babies

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                • #9
                  Originally posted by Angelmummy82 View Post
                  Hey miss skittles, I have read a few of your posts. It seems like you have not had things explained clearly to you about ttc in the future, sounds a bit slack on your doctors part! Why would you be exposed to radiation during neurosurgery? I am a nurse and this sounds pretty unusual given many people undergo surgery whilst pregnant without any probs for the baby? If you are going to have to terminate wouldn't it be better to have the surgery first and then only terminate if it has caused probs for bub? I don't want to cause you anymore grief but it just sounds like an odd way to proceed, terminating because there could be problems rather than because there are problems. There are anti-epileptics that are safe during pregnancy too, have they discussed these options with you?

                  They refused to operate, even if I said I'd terminate.
                  They wouldn't do a lung test due to radiation.
                  They also wouldn't risk me turning around saying NO ILL KEEP IT...they said there could be BIRTH DEFECTS.

                  Major right lobe lesionecttomy..brain surgery.
                  They did NOT feel comfortable operating..and it very clear :-(

                  I just want it ALL over and done with now. My brains going to EXPLODE :-/
                  I'm seizuring so much due to stress. :-(
                  Last edited by MissSkittles; 04-12-2011, 14:45.

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                  • #10
                    There's no option right now, for my health, stress and numerous amount of seizures...
                    To terminate.

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                    • #11
                      Miss skittles this is a terrible situation. As an experienced health professional I find it extremely unusual that you would be denied surgery based on a risk of birth defects. It would be up to you to sign a consent form with the understanding there is risk involved. I can't stress enough how important I think it is you seek further advice on this potentially from a lawyer. If you have made your decision then no probs but if you don't want to terminate based on a possibility then I would be fighting for your right to treatment. It is possible to take precautions when exposed to radiation in tests when you are pregnant and surgery alone doesn't necessarily cause probs to a baby. The explanations you are being given just dont seem good enough when your outcome is so drastic. I say this out of concern for you as I have had a medically necessary termination and it is a devastating thing to live with, you need to have as much information as you can before making a choice like this. I still think you should explore medication as it can be a very manageable alternative and could get you through the next 7 months until you could deliver your baby. I would hate to see anyone in a situation like this due to misinformation.

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                      • #12
                        And can I also stress that no one can make a decision as to whether you have a baby with disabilities other than you. They absolutely cannot deny treatment because they are concerned you would then want to continue the pregnancy if there were problems. I work in health ethics as well and I can say this for certain.

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                        • #13
                          Angelmummy, brain surgery OFTEN uses radiation ie to locate sites within the brain. I'm not sure why you needed a lung test OP but depending on what sort, CT, nuclear med, that will also expose the baby to large amounts of radiation. And wearing lead over the abdomen won't protect from internal scatter so that doesn't help much. I can unfortunately see why the surgeons won't operate while pregnant as even if the op signs something saying she knows the risks she can still turn around and sue later. It's terrible but unfortunately any product of our litigious lifestyles that doctors are now too scared to take risks like that.

                          As far as medications go, I'm sure the op has tried many different meds but of courses these can also cause severe birth defects.

                          Op, I'm so sorry you have to do this. Of course you don't have to terminate but if you decide to, you know you are doing the best thing for yourself and any future babies. It's no use having a baby if her mum is dead or brain damaged from hypoxia or an injury while you have a seizure.

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                          • #14
                            Originally posted by Angelmummy82 View Post
                            Why would you be exposed to radiation during neurosurgery? I am a nurse and this sounds pretty unusual given many people undergo surgery whilst pregnant without any probs for the baby? If you are going to have to terminate wouldn't it be better to have the surgery first and then only terminate if it has caused probs for bub? I don't want to cause you anymore grief but it just sounds like an odd way to proceed, terminating because there could be problems rather than because there are problems. There are anti-epileptics that are safe during pregnancy too, have they discussed these options with you?
                            I don't actually know much about missSkittles personal situation, but I just wanted to say that neurosurgery is different to most surgery and is highly specific, even to different types of conditions (brain tumur, epilespy etc). So I don't think it is about the radiation during the surgery (like I said, don't know missSkittles situation) but I do know that for epilepsy you need to do images within 24 hours prior to the surgery. This means injecting the person with radiation so that it runs through all of their veins, in some cases provoking an attack to get the exact part of the brain you are about to remove. You can't even go near someone who has had this injected into their body if you are a child or pregnant, so they would not inject it into someone who is actually pregnant themselves.

                            With radiation you can't always tell what deformities have occured but they can be horrific and internal.

                            I can't comment on whether she could keep the baby and still have epilepsy because I don't know anything about her, but I just wanted to add what little I know about having brain surgery, that the doctors have a good reason not to perform a surgery which involves radiation and taking out a part of someones brain on a pregnant woman. And you can't always consent to something no matter what, the doctors can refuse to operate on her if they think it will do more harm than good.

                            eta... brain surgery is also risky. What if she can't consent to an abortion if the operation goes wrong?
                            Last edited by TinyLittleTootsies; 04-12-2011, 15:34.

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                            • #15
                              I agree these decisions are often about risk of litigation as sad as that is. I would suggest seeing a neurosurgeon at a catholic governed hospital if you want to try all your options first. I have seen time and time again medical professionals leading people to make decisions that are in the best interest of the hospital rather than that individual person. There are some gaps in this story that are concerning.

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