Here's the Update for all who asked
My daughter Laura is 20 and has Moyamoya that was corrected with bilateral indirect bypass surgeries in 1990 and was cleared by the surgeon in 1991 as completely revacularized.
She was 90-100% blocked on both internal carotid arteries just prior to surgery, had TIAs prior to diagnosis, and one mini-stroke 5 months post-surgery that affected her left side motor skills.
She fully recovered from the stroke due to a combination of having preventative daily dosages of Robitussin-DM in her system and daily reinforcement of left-side usage for about 3 months or more post.
Other than some puberty-onset migraines around age 11 and the accompanying MRI to verify there was no Moyamoya cause, she has been without Dr supervision of her condition or any precautionary meds since 1993.
Fast-forward to this May when she confirmed via ultrasound that she was indeed pregnant!
So many questions about what her risks might be, so little data or studies with any real answers...
And too far along for anyone to want to do an MRI at this point either.
So, discovered this site, and promised to post the data when the big day came
She has been monitored by the High Risk OB-GYN group at our local County Hospital, and been seen by the Neurology Dept and had endless Ultrasounds of the baby since July.
Other than a consult with Dr Steinberg no expert input occurred (see other posts for details on this).
Neurology was absolutely paranoid, erroring on the side of anxious caution in all directions but still have little clue what they are dealing with...
Laura went into labor 11:15PM on October 2nd, regular 5 minutes apart contractions by 12:15AM on the 3rd, went into the hospital by 2AM....
She's hooked up to a fetal and a contraction monitor, and it shows steady contractions of mild strength and a baby reacting angrily to every one!
Well, after the exam (80% effaced, 1 dilation) and laying around for a while with steadily decreasing contractions, they did an ultrasound to check amniotic fluid levels (this will tell them if you are post-term and they should rush the delivery- she was right on schedule and exactly when Mom said she would start
).
3:30AM Oct 3rd, another exam, now up to 2-3 dilation but slow progress and the pain is clearly still managable for her.
Nurses would like to send her home for now, Neurology vetos it and wants them to keep her indefinitely.
They also tell the nurses that they want an epidural by 4 dilation (this is extremely early for most women) to avoid 'stress' in the labor process.
Hmmm... understand they are afraid of an aneurysm or somesuch, but clearly they have confused the studies between childhood diagnoses and adult pregnant diagnoses, and an epi puts her at risk of LOW bloodpressure or hypotension which is the thing the REALLY want to avoid at all costs.
By 4:30AM the Triage unit is overrun with emergency OB cases and the nurses are becoming insane- Laura is lost in the crowd for an hour, then re-discovered and told to go out and walk the halls for 2 hours and not return unless something dramatic happens.
7:10AM she has walked alot, laid down out on the benches for awhile, then woken and gotten the urge to use the potty- we march back down to the Triage since they wanted her to only use that bathroom, and low and behold more evidence of progress (won't gross out the non-mommys on the board).
7:30AM physical confirms some internal progress BUT she's now back down to 1 dilation and 0% effaced!
Acckk! That lying down on her side in the hall was a really bad idea!
So, Back Home by 8:10AM on Oct 3rd with instructions to returne ONLY if she is having contractions severe enough she cannot speak during them when she really tries...
She is convinced this is true by 2:30PM but the nurses she calls say 'wait an hour' 3 times in a row- I guess they could tell she was not in enough pain to qualify yet.
Finally, mom-in-law fixes an Italian dinner very heavy on the Garlic and within 20 minutes Laura's contractions speed up and become considerably more intense. We still wait an hour before calling the hospital, and when Laura drops the phone and I have to take over talking to the nurse they say "come right in!".
OK, so BACK to the hospital by 7:30PM October 3rd- by now Laura has actually interacted with all 3 shifts of Labor and Delivery nurses and they recognize her on sight
Back on the fetal and contraction monitors, showing steadier baby heartrate than last time but stronger contractions too.
In for an exam, determine she is around 3 dilation and fully effaced; by 8:10 she is in serious pain and starting to think that the Epidural is a neccessity vs an evil to be avoided.
Mom is still worried about that hypotension risk factor and have been keeping her well-hydrated for the last day, even in the labor room where they usually limit you to ice chips.
Nurses seem to have a better handle on the risk-factors than the voices-on-high from Neurology, but no one at VMC has EVER had a Moyamoya case come in, let alone to Maternity so she is the star patient- since this is County and not a teaching facility the crowds are limited to those directly involved and they all seem to think they won a lottery or something.
see Pt 2 for the continuing saga