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3/14 The Diagnosis: Polycystic Kidney Disease

March 14, 2018 | 20 weeks

This was the day that we were scheduled to see the specialist. I dreamt about the appointment all night long. Dreamt that I would see more fluid. Dreamt that I would see my baby moving, wiggling, and doing somersaults inside my womb. But we didn't get any good news at the ultrasound. Everything looked the same as it did the previous week, maybe even a little bit worse. All the extra hydration & rest didn't do anything to help.

Dr. Devore gave a diagnosis of polycystic kidney disease, which is something I came across in all the research I did, so it wasn't a complete shock. I learned that there were 2 types: Autosomal Dominant Polycystic Kidney Disease (ADPKD) and Autosomal Recessive Polycystic Kidney Disease (ARPKD). He said it was the ARPKD and the condition was fatal.

The kidneys are enlarged and full of cysts, and they will only grow bigger and bigger, encroaching upon the other organs in baby's abdominal cavity. No blood is going to them. At this point in the pregnancy, baby is supposed to produce their own amniotic fluid via the kidneys & bladder, but the  kidney disease is preventing that from taking place. The lungs and bones are not developing because of the lack of amniotic fluid. The heart is having to work extra hard. I was supposed to be 20 weeks along, but the baby measured about 2 weeks behind, except for the abdomen (swollen with the enlarged kidneys) that measured right on track.

He didn't think there was anything that could be done to help the baby. He also said there's really nothing that can be done to enable baby to survive if baby makes it full term, because of the severely underdeveloped lungs. All we could do is wait and see the days the Lord has ordained for this child. Since I wasn't feeling a lot of movement from baby, we bought a fetal doppler and began checking for a heartbeat every day.

As we shared the update with friends and family, I remember how difficult it was to write all that out  & see the word "fatal" on my screen, but it is our current reality. There is a baby dying inside of me.


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