Here are somethings I've been worrying about ever since the Perinatology office told us that we would only be followed by our local doctor, now. Here's what I e-mailed her and if there are any other questions you can think of that we should be asking please e-mail us or leave a comment.
Questions for Doctors:
1. Did the FISH results indicate that the trysomy 18 was across every cell?
2. Are the other problems identified in the ultrasound beside the heart indicating that this baby if she makes it to birth will not survive more than a few hours or at all. Are there indicators that can help to predict whether this baby has the capacity to live at birth if she makes it that far, even if it's just for a few hours?
3. They told us that we could consider a cardiology consultation. What would we gain from this? If the other problems listed indicate she would not even live at birth would a cardiology consultation be a mute point? We would like a cardiology consultation if the other problems don't rule out the possibility that she may live at birth even a few hours. If the cardiology consultation may give us an idea of whether the babies heart is capable of keeping her alive at birth for few hours then we would like one if the other problems don't rule this possiblility out.
4. These are the problems that were identified thus far, are there any others that we missed?VSD and ASDasymetrical pulmonary arteries, one is larger than the other
mitral and tricuspid valves opening in the wrong direction
strawberry shaped head
calcification in the bowel- what is the extent of this? what does this mean?
polyhydramnios- what does this mean?
gap between the bag of waters and uterus. what does this mean?
5. We understand that the statistics are not in this babies favor. Are there any indicator that can help predict whether this baby may be one of the 10% who make it their first birthday? Are there interventions that may improve the chances? Is St.John's equipped to assess and perform these interventions if they become appropriate for her? I guess my concern is that she may end up being one of the babies who is capable of living to 1 year old or older and the interventions and assessments that would help get her there would not be in place. Would the interventions be painful and not worthwhile if she is only going to live a few hours anyway. If she is only going to live a few hours we prefer to make her as comfortable as possible and not miss the opportunity to hold her.
6. Did the amniocentesis confirm that this baby is a girl?