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  1. #1
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    Default Worried about level of care in case of repeat Pre-eclampsia...advice?

    Hello. Please bare with me this will be long winded... My son was born in June of 2012 at 33 weeks due to severe Pre-eclampsia. I was receiving 'shared care' between a gp and a locum ob/gyn and the first mention of testing for possible PE came just 2 weeks before I had my son by emergency c-section. I was advised that my test results were 10x worse than 2 days prior and I would be having a c-section the same day I was admitted as we couldn't afford the time labour could take or the stress it would place on myself and bub.

    My son experienced the usual respiratory issues, jaundice etc and the earlier stages of IUGR. Almost immediately after transitioning from incubator to open top crib he contracted RSV and was placed in isolation - this was actually the roughest stage (excluding the first few days) in our hospital stay, and almost doubled the time spent that would have otherwise been spent in hospital.

    I myself required Magnesium Sulfate (among other things), hourly checks and was restricted to bed and unable to see my son (due to the cramped nature of the NICU) for the first few days. I ended up spending a bit longer than usually necessary in hospital due to the struggle to control my BP and concerns over raised liver enzymes. I now have high BP requiring ongoing management, and I'm pretty sure I still have raised liver enzymes (according to regular bloods done by my reumatologist). I am lead to believe that what I thought would be a low risk of repeat PE (maybe 5-10%) is more likely to be around a 30% chance or higher.

    I certainly hope this doesn't even become a factor as we don't want to go through (or have another poor bub go through) another PE or NICU/NNU experience, but my concerns stem largely from the fact that we are approx. 500km from the type of care these situations require. Our son was born and cared for in a hospital this far from home, and the emergency accommodation (provided by the hospital) in which we stayed is shared and therefore unable to house those who already have other children with them. Our area has only 1 constant ob/gyn (who is assisted with his work loads by locums who generally only stay 6 months) and the pathetic state of health care and flippant/dismissive attitude of the majority of doctors (including the hospital) in the area is common knowledge locally and quite the sore point. Emergency aero-medical transport comes to this area an average of 2-3 times a day, and we have already flown with them 3 times.

    My post today is a question, an inquiry, a search for information. I wondered whether anyone else's bub was prem or unwell due to the effects of PE - and in turn whether anyone has had (or is expecting) other children after being advised that the likelihood of repeat PE could be high... What I would love to know is if anyone would suggest or recommend a particular doctor or specialist (or a resource designed to help you find one) who is receptive, thorough, proactive, and perhaps more knowledgeable about PE or high risk pregnancies generally? Even if this person was only an involved for an initial consultation and later became a name on paper, a point of contact for the care we receive locally, in case the situation deteriorates. We had multiple negative experiences with the local doctors/hospital the first time round (and since) and it would seem unwise and potentially dangerous to proceed without ensuring we are as informed and well cared for as possible.

    Any help, advice, suggestions, direction in which to continue our search, would be greatly appreciated. Thanks.

  2. #2
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    SOOOOO sorry for the total lack of reply oh so long ago... as it was my first post on any site like this, once i lost the note i had jotted the website/log in etc down on i was totally lost. I live in the South East of SA, the nearest maternity ward/hospital is in Mount Gambier... the hospital doesn't get a very good wrap tho and they can't cater for anything before 35 weeks or anything with any sort of complication... then they call in the Royal Flying Doctors Service and have you flown to Adelaide (as they did with us first time around).

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    Did you end up finding a carer? I have a friend in SA who is very knowledgable. If you were in WA, I would simply reply and tell you to go to KEMH. My OB is amazing (though private) and head of the pre-term birth prevention clinic.


 

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