In memory of Baby Boy Taylor Moore

                                                   A much loved and much wanted baby....


Unfortunately we did not receive positive news from our visit to the specialist yesterday. The diagnosis that I suspected, posterior urethral valves, was confirmed and a severe case of it as well.  It's a simple but very major anatomic defect which causes obstruction of the bladder and prevents them from urinating normally.  This in turn causes the urine to back up into the kidneys and causes kidney damage and eventually kidney failure.  When the urine can't be released naturally as it should be into the amniotic fluid then the fluid becomes drastically increased and leads to problems with the lungs forming properly.  Increased bladder size can also encroach upon the chest cavity and compress the heart and lungs. 

It's not a condition for which absolutely nothing can be done, however the statistics are very bleak.  If your amnio testing comes back clean, devoid of any chromosomal abnormalities and the baby's kidney function is still intact, then a fetal shunt can be considered to shunt the urine back into the amniotic fluid.  Unfortunately it still doesn't actually "fix" the problem with the obstructive valves, but it's some sort of bandaid. However, they usually have to go in 4-5 times to replace the shunt as it gets obstructed, gets pulled out, etc...There is a 40% mortality in utero of the babies they place a shunt in (100% mortality if no intervention.)  Then of those that make it past the shunting, usually they are born severely prematurely in the 29-30 week range with greatly impaired lung function.  Quite a few of those little ones will pass away within hours or days.  The 15% that make it this far are then faced with a couple of surgeries immediately upon birth and usually looking at several years of dialysis and a kidney transplant as almost all will have kidney failure.

The high risk fetal specialist that we saw was quite surprised at how big the bladder was at such an early period of time and feared for a complete obstruction. He was also not happy that he already saw evidence of kidney damage. Definitely times you don't like to hear the head guy go, "ohhhhh" :-(  He gave us the above options but ultimately was very guarded.
We went back over to my regular ob and discussed things further, she seemed more "hopeful" and offered the same things but when I pushed her and bluntly asked if any of these had a good outcome with a living child now, she said "no."

"Luckily" Randy and I had done our research before hand, I had been reading everything I could find over the last week, trying to find a shred,a glimmer of hope for this condition (and hoping more and more from what I had been reading that I would be wrong) ....we discussed open fetal surgery but it's still experimental and hasn't proven any good outcomes.  This baby was much loved and wanted and we truly wanted to do anything we could for him (yes it was a boy) and while we believe in the wonders of science and medicine, we also very much believe in the quality of life and don't want to only have a 15% chance of going to term and then having that little baby boy have to go through so much.  With then likely lifelong urination and kidney problems.  Seems so crazy that a "little" defective valve can wreak so much havoc.  Seems pretty crappy that a 1 in 8000 chance found me :-(

With a heavy heart but a clear conscience in our agreement we have chosen to let this baby go and not have him go through the terrible odds.  Never in my worst fears did I ever think it would get to this point at ALL! Where I would even need to consider anything remotely like that!! Especially when I got such a GOOD report from my ultrascreen last week.  Sigh.  I guess we can only hope to try again and be successful and at least go on a nice vacation in a month or two (what the heck, I've got all my saved up vacation! :-(

My Mom flew down here last night and she'll be here the week with us so the comfort will be nice. This blog will probably be a bit quiet for a little while until life is back in order and there's anything related to put on here.

Thank you so much for all your hugs, thoughts, prayers, kindness, support and empathy...one day hopefully this will work well for us and we'll have a beautiful healthy child.