Since I didn't get a say in what time my ultrasound appointment was scheduled for (11:30 am), B couldn't attend because of work. I went in, confident that this would be a quick scan to be sure everything was developing on schedule. An hour later, feeling battered and bruised, I was asked to come back in 2 hours. The baby was hiding behind my pelvis and 2 different sonographers were having trouble imaging it's heart. I was advised to get something to eat (which often causes baby to move), and come back in 2 hours so the Radiologist could try to image it herself. I felt the tiniest twinge of concern, but dismissed it. I called B on my cell and told him the baby was being uncooperative about it's heart but perfectly cooperative about it's sex (which we were adamant about not finding out). He laughed and said it figured, we'd be chasing the baby all over the house trying to get it to keep the diapers on. I laughed and decided to run an errand and get some food.
If only I could laugh now.
When I came back, I had a wait (of course), and the radiologist came in to do the scan herself. About 15 minutes later she flipped the lights back on and dropped a bomb. A big bomb. Congenital Heart Defect. What they had seen earlier, but couldn't tell me without having an M.D. confirm it was that the baby's heart is asymmetrical. The left ventricle is not growing.
They let me call B's office (I'd left my cell in the car), I just told his boss to send him home without giving any specifics (although considering I was crying, he probably didn't need them), and they called a genetic counselor down to talk to me. She dropped another bomb. The disease is nearly always fatal. After taking a family history as far back as I could provide, she said she sees nothing to indicate that this is genetic, or could have been expected, and no indication that it would be expected to happen again. It is a fluke, a random happenstance.
I came home to a frantic B, of course, and just collapsed in his arms while he begged me to talk to him and tell him what was the matter. He, of course, sat me down in front of a computer, he sat down in front of another, and we both started researching. I'll save you the trouble.
"one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects... without treatment... uniformly fatal, often within the first hours or days of life" - Cincinnati Children's
Short of open-heart surgery on a newborn or a neonate heart transplant, survival chance is zero. That if a good candidate for surgery, survival rates of the first surgery (at a few days old) is about 80%. A second surgery at several months of age has survival rates of about 80%. The third surgery at 18 months-3 years also has a survival rate of about 80%. And even if the baby survives all three surgeries, the survival rate to 5 years old is about 60% (I suck at statistics, but 80%+80%+80%+60% does not equal good news). And then the drugs. For his/her entire life.
All of this falls under the heading of "palliative care". None of it is a cure. There is no cure.
So we've been crying. And talking. And crying some more. Discussing options, quality of life, dreams, desires, fears... and so far the only conclusion we've reached is that we love each other and we'll get through this. Well, that and we both wanted to get rip-roaring drunk...
I finally managed to drift off after B popped in a movie for me. At some later point, he also managed to drift off, since he was asleep (and the tv was off) when I woke up at 3:00 am to pee... because no matter what else is going on, I'm still pregnant, and I can't make it a night without peeing. When I couldn't get back to sleep for the crying, I decided I needed to get this out, so I found myself creating a blog at 4am of one of the worst nights of my life.
We have an appointment on Tuesday with a Pediatric Cardiologist 2 hours away to do a fetal echocardiogram. We have a very slim chance of a false diagnosis. I am not holding my breath. More likely, we will find out the severity of the defect, and the doctor will want to discuss our options.
