Questions and Answers

Questions and Answers


1) Q. Did we know before Neil was born that he would be born with "problems"?

A.  Yes.  But we did not know what problems, or the extent of the problems.  At our 20 week ultrasound we found that his bladder was enlarged.  2 weeks later after much discussion with a specialist in Seattle we were told that our baby would not and could not survive.  We were given two choices; the first to terminate the pregnancy, second to wait for spontaneous abortion.  We chose to wait for our baby to die by himself.  We were told the chances of him surviving past the next two weeks were astronomical (a nice way of saying there is no chance).  He confounded the doctors and survived.  He kept growing and living. 


2) Q.  So what DID you know before he was born?

A.  We knew that his bladder wasn't draining properly and that his kidneys were dilated.  What this meant for his future.... that was a big question mark.  We knew that it was possible he wouldn't survive minutes after birth.  It was also a possibility that he would be in the hospital for a few days and be home with us shortly there after.


3) Q. Was Neil premature?

A.  Well, yes.  But that is not why he was in the NICU at Seattle Children's Hospital.  At 35 weeks we had a regular check up with Dr. Cheng in Seattle.  At this appointment we were told his amniotic fluid was dangerously low and that he hadn't grown in the last four weeks.  Dr. Cheng said we needed to deliver him tomorrow.  Sean and I said all right.. and thus he was born via C-Section.


4) Q.  What did he have?  (What were his medical conditions)

A.  This is a hard one, it cannot be answered fully here. So very basically he had Prune Belly Syndrome.  He also had a PDA that did require ligation, and bad lungs. Unrelated he had Mal Rotation of his gut requiring surgery. During his short life he also had a serious infection called NEC and Pneumonia.  Keep in mind that like with most any disease or syndrome there are varying degrees of severity.  Unfortunately Neils severity was well, severe.  Prune Belly itself encompasses several organs please look up more info on this syndrome on your own if you desire.  It is too hard to explain it all here.  Unfortunately there are some, but not a lot of resources about it online.


5) Q. Why did he die?

A.  His lungs failed him. 


6) Q.  Is Prune Belly Syndrome genetic?

A. No. 


7) Q. Did you know he was going to die?

A.  First of all what kind of question is that!   (It has been asked to me)  The short of it is NO, and YES.  All along did we know?  No, of course not.  February 13th.  The day he passed away, YES.  Early that morning we knew.  That story will be saved for another day.  Maybe.  But at the same time that might just be too sacred for me to share.