Tuesday we drove to a children's hospital for a fetal MRI to check out baby's intracranial structures and anatomy. I lay down on a skinny gray bed and had a foam cushion put under my knees and right side, and a foam cage placed over my abdomen. Then the bed was moved into the MRI machine, which was huge and gray. It felt like starting to go down a water tube slide. It was a bit claustrophobic but not awful. It took about half an hour and was very loud, even with earplugs. Nick was in the room with me. Some noises were like fog horns and others vibrated. She said it would take about 48 hours for results, but it turned out to be half that time.
Today, Wednesday, Nick went to work and I stayed home with my feet up. We got a call from our genetic counselor around 5pm. She had the MRI results which showed normal brain and cerebellum size. They noticed enlarged kidneys, about 3.3 and 3.0 (cm? mm? I don't know.) And some blood results came back which measured afp or alphafetalprotein. They like to see a number closer to 1, a high number can indicate spina bifida trouble, and ours was 18. Crazy high. It can also indicate kidney issues, which we obviously have.
She threw out a name of a scary syndrome that it is possible baby has: Finnish nephrotic syndrome. Kidney issues didn't sound that terrifying at first and then she added that it is usually lethal to the baby, because it requires kidney transplants, and there are not usually ones available for newborns. He would be on dialysis which is also not good for them. She said that if this turns out to be the case, the hospital would probably consider suggesting a compassionate induction, where we have the baby and then keep him comfortable and say goodbye.
Nick feels like we should not be too concerned about this yet, and I mostly agree. The counselor said this is just a slim chance that he has it, and if he doesn't (test results will be back in about 4-5 weeks, after the amnio/micro array results because they need those chromosomes first), they can test for 10 other even rarer kidney problems. The really high afp is freaking me out though.
She will talk to the doctor and call us back tomorrow, since we need to get in for another ultrasound to monitor baby's fluids.
I feel really helpless. It's awful worrying like this and not knowing if we will bring home a baby. He's kicking right now and it breaks my heart that might be all we ever get of him.
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