Multicystic Dysplastic Kidney

My wife and I just got done with an appt. with Maternal Fetal Medicine regarding our baby girl.  By all intense purposes she is going to be a happy healthy little girl, BUT with one exception during her ultrasound at the OB doctors office (19 wks.) they found that only one kidney and it had cysts on it (dysplastic cysts).  Now since seeing MFM we have gone to Multicystic Dysplastic Kidney and the doctor wants an amniocentesis done and a repeat ultrasound in 2 weeks to decide about terminating the pregnancy, there was question about if the bladder was present and it was with some fluid in it.
  
Right now there is a lot of fluid and looked as though the baby's bladder was producing some urine. He feels this will change in the next two to four weeks. Our discussion went from having to terminate this pregnancy at that time to delivering at full term and trying to find a baby cadaver kidney to a potters syndrome and the baby passes away in a few days. They also wanted to do amnio right there this morning to check for chromosome abnormalities. The genetic counselor said it will just give them a better idea of why it happened, it doesn't change the outcome though. We told them we needed to think about it. I am sure the doctor is a great physician however he is very blunt. I feel like I am planning a funeral instead of getting ready for a nursery. Sorry if this does not make any sense, as we are really upset.

The genetic counselor states that in most cases the cysts will disappear by the 2nd birthday and the baby will be fine.  I know of other people that had babies born with one kidney and they are doing fine.

We are both really scared and confused.  Any guidance/help in understanding this would be GREATLY appreciated.  Yesterday we were very happy and the baby is VERY active, now we are terrified to no end.

Thanks for your time.
Ben

[nicki68]

Ok, first of all, do not terminate the pregnancy. This is not a reason to at all. My daughter was born with this and she is now 14. There is so much information about this disease now and honestly, I wonder if it is good or not for the forums as it seems parents get so upset. We were scaed too. I remember when we found out but we were at first just told it was no big deal. Like nothing at all was wrong. Well, in the grand picture there was no need to worry. You will though and thats just what happens when your a parent. She will be fine. It is very common. Back before ultrasounds, many people had this and didn't know it till late in life when another problem arose and it was found one kidney was there. Please, this is no reason to panic or do a bunch of tests. Most doctors would brush this off and termination isn't needed but we ran into being pressured due to severe morning sickness. I would not have my daughter. Now, I had 14 ultrsounds and 13 with my last to be sure there wasn't anything wrong with him. I have three and she is in the middle. After birth, they will check to make sure she doesn't have reflux or there isn't any problem with function. Even if there were, there is so much that can be done and is not a big deal. It seems like it now but it won't. I promise. The one thing I want to say is to enjoy the pregnancy as it is hard when you hear news like this. My daughter is very bright and looks perfect. She is a tom boy and has been knocked around by her brothers! I will be thinking of you all. Bring that little girl into this world! That whole kidney thing is such a mild thing in comparrison so I hope this helps. Yes, every baby is different but this is super common and only if the cysts spread to the other side, which just is super rare would there be any concern. So many people want babies and this baby is perfect. I promise you won't regret aving her. Just to let you know her name is Grace, for that day we did not know what was wrong and the information was so bad, it was the grace of God she was here. So, that gives you an idea of how scared we were. Now, the things to really watch for after birth even down the road is her Uterus. It can cause Uterus trouble but rarely does, Reflux which my daughter has mild refulx and was on profolative antibiotics for six weeks. Breastfeed to give her the best chance and lots of love. Fell free to ask me anything. Congradulations on you baby. Don't let this rob you of the happiness!