“They said to us, ‘This looks like polycystic kidney disease,’ and he explained to us what PKD was, that our baby had kidneys that were enlarged and cystic and that if Owen had it, then there was a pretty good chance that I had it as well.”
I didn’t know anything about PKD before our diagnosis. I was 32 weeks pregnant and got in a little fender bender, and my doctor said let’s do an ultrasound just to make sure that everything is okay. So, the tech was looking and looking, and then she said I’m having a hard time seeing something, let me go get someone else, and the next person kind of said the same and brought our doctor in, and we immediately felt like this is not good news, and our doctor told us that they could see that Owen’s kidneys were cystic and that they were larger than they should be.
My OB sent us to see a specialist that same day, and after an ultrasound they said to us, “This looks like polycystic kidney disease,” and he explained to us what PKD was, that our baby had kidneys that were enlarged and cystic and that if Owen had it, then there was a pretty good chance that I had it as well. So, then we met with a genetic counselor, and we laid out our family tree, but we don’t have any history of kidney disease in our family. So, as far as we know, I’m the first in my family to be diagnosed with PKD.
Once we understood that this was something that Owen had and that this was something that I had, we were in that fearful place of still not knowing how he would be when he was born, if he was going to survive, if his kidneys were going to be functioning well. None of that was something they could tell us from looking at an ultrasound.
He had a lot of fluid around him still, which was good. They told us that was a good indicator, but other than that, we really didn’t know and thinking forward, we were in a place of thinking that we could lose him, and that was really scary.
So, we had a lot of very scary things that we just didn’t have any answers to until Owen was born and comes out, and Owen’s a great-looking baby boy.
So, that had a huge amount of relief for us, and then obviously, needed to get his blood pressure under control, needed to assess his kidney function, things like that, which was a lot of urinalyses evaluations, and I think it was four or five days in the neonatal intensive care unit, and we were able to bring him home.
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