It took almost an hour to get to this hospital but it was definitely worth the trip.  We were greeted by the high risk pregnancy nurse manager who went through our history and we talked about some of the ideas we’ve had regarding possible interventions for Nudge.  She was great; almost like a warm hug on legs.  She knew what she was talking about and she listened when we needed her to listen.  After thirty minutes or so, she took us to the obstetrician’s consulting room where she spent the next three hours with us – there were no junior doctors and no nobody whispering amongst themselves.  She was very professional, and everything she said was clinical and scientific but followed immediately by the plain English version.  When she spoke to us, she really did speak to us and without any condescension at all.  That was the one thing that I was so sick of with XXXXX Hospital – the doctors were always making flippant remarks or talked down to me.  Very unprofessional!

I asked about fetal hiccups and it turns out that fetal hiccups have nothing to do with fluid going into the baby’s lungs or stomach.  She said she has seen babies without stomachs having the hiccups!  Apparently fetal hiccups are controlled by the brain/central nervous system and are an indication that the baby’s CNS is working.

I’d made a copy of all of the investigations to date but she declined to look at them until she, and I quote, “meet Nudge myself”.  She did an ultrasound and I was floored by the detail in it!  Her machine must be so much newer then the ones we’ve had access to so far because the images were very sharp, even without the fluid.  She also did a 3D ultrasound as the detail is slightly better and without any amniotic fluid, it wasn’t easy to see everything.  So, she met Nudge herself and took every possible measurement – this was the first time anyone had even bothered to do an AFI (amnio fluid index – it was 0).  She watched his movements and paid careful attention to his limbs (size and movement) as she explained the presence of contractures or talipes can also be a good indicator of poor lung development (ie: clubbed feet at this point would indicate a long time without sufficient fluid, therefore she would expect poor lung dev too).  Nudge was hiding his face behind a mess of hands and feet, and was refusing to show her them in detail but based on the movement, she felt clubbing wasn’t an issue at this point.  She checked so many things and spent a good amount of time going over every inch of him.

Unfortunately her findings were consistent with the MRI.  She couldn’t see kidneys or kidney tissue, bladder or renal arteries.  His right lung was 14mm in diametre which is below the 5th percentile.  The left lung was only 5mm in diametre which is so small it didn’t register on the percentile chart at all.  Even if it was possible to do something about his renal system, his lungs are so hard and small that she doesn’t believe it will be possible to ventilate him at all.  BUT… to be completely certain she is getting us back tomorrow to see a neonatologist as well as a geneticist and a social worker.  I doubt the neonatologist will say anything different but it’s great that she has the whole team involved in our care and isn’t leaving anything to chance.  Finally she recommended that we have another CVS done to create a cell line so when we know what we want to test for (following postmortem), we’ll have sufficient genetic material to do it.  Although the procedure is very unpleasant (19g needle through your abdomen with a local that doesn’t go deep enough to numb your uterus, ouch!), I was very happy to have this done because of the problems we had with Max’s contaminated samples.  I’m really glad that this doctor is taking our history into account, as well as looking forward in as far as helping to do whatever possible to avoid another renal agenesis baby in the future.

Although we live a long way out of this hospital’s catchment area, the obstetrician has agreed to deliver Nudge and therefore has transferred all of my care to this hospital.  I cannot describe just how happy we are with this doctor and her team.  While the prognosis is very bad, the high risk team have been great as far as promising to do whatever possible to create a positive birth experience and to give us as much time with Nudge as possible.  And that’s exactly what we need.  So all in all, it’s not good news but it’s so much better than it would have been had we still been stuck at the dodgy hospital.  And while we’re devastated, we’re also feeling very peaceful tonight.

Random factoid:  The hospital where I was born, and the hospital where the husband was born were merged and relocated to form the hospital where Nudge will be born!  I think the planets must’ve been aligned when we read that article over the weekend!

This entry was posted on Tuesday 5th January 2010 at 7:34 PM and is filed under Nudge, Pregnancy. Both comments and pings are currently closed.