20 wk ultrasound shows one working kidney...and it has issues

[Anonymous]

So glad you’re feeling better! We discovered that my daughter has a single kidney when I was pregnant and it was a very stressful time. She is happy and healthy now with no issues. We see Dr Seo-Mayer at pediatric specialists of VA and she is amazing.

[Anonymous]

Anonymous wrote:So glad you’re feeling better! We discovered that my daughter has a single kidney when I was pregnant and it was a very stressful time. She is happy and healthy now with no issues. We see Dr Seo-Mayer at pediatric specialists of VA and she is amazing.

OP here - thanks so much for this reassuring note. I think I will have some nervousness until she is here, but I am feeling a thousand times more confident than last week.

[Anonymous]

OP - no particular kidney experience, but experience with other severe baby issues (and child is now fine!). I'm so glad you had a reassuring follow-up and are feeling better. We are SO FORTUNATE to have so many amazing doctors and top-notch care facilities in this area. Both CNMC and Inova are terrific for complex cases, and no matter what you and your child will need, odds are high that you'll find the best possible care without having to go far from home for it. Don't hesitate either if you feel you need some emotional support during the rest of your pregnancy or after delivery. I didn't pay enough attention to my own worries and anxieties, and I could have really made things easier for myself in those days had I paid more attention to my own feelings while focusing on my child's care too. (Oh, and generally staying away from "Dr. Google" is always an excellent self-care strategy! Trust your real life doctors.)

[Anonymous]

This was my thread. I wanted to revisit this in case anyone happens upon the thread searching for multicystic dyslastic kidney (MCDK).

Thank you so much to everyone who reassured me at the time that things would be okay.

I had the baby in May and she is healthy and beautiful. She had an ultrasound shortly after birth, which indeed showed a nonfunctional, multicystic kidney. The other kidney that had appeared to have a duplicated collecting system on the ultrasound was actually normal. It was just a misdiagnosis on that side.

Baby had more imaging (VCUG and renogram) at 4 months and will have a third ultrasound before she is 1 year. In her second year, she will have 2 ultrasounds, and one per year after that. The prognosis is very good. The main thing with MCDK is keeping the good kidney healthy, which means protecting it from urine reflux. If the cystic kidney starts to cause problems, we can have it removed, but it is most likely that it will involute (shrink up and go away) on its own during her childhood.

At this point, her good kidney has compensated and grown large and is doing most of the work of 2 normal kidneys.

I remember how scared I was after the 20 week ultrasound so I really wanted to share this story in case anyone is in the same situation. Our baby is so perfect and just the light of our lives. I rarely think about her kidney issue unless we are discussing it with the doctor.

[Anonymous]

Great news, OP!

[Anonymous]

So happy that you updated.

My daughter has also had major kidney issues and surgeries. It can be so scary when they do not work, or work well. All best to you and your baby.

[Anonymous]

Oh that’s wonderful OP! Nice of you to update so that others searching may see it. I hope you are enjoying your sweet babe.

[Anonymous]

Anonymous wrote:I have a child with only one kidney. The other one is nonexistent. I realize this is not what you are dealing with (and he is totally healthy at age 6 after many stressful weekly ultrasounds) but I cannot recommend Dr. John Gearhart enough. He is a nephrology specialist at Johns Hopkins in Baltimore but he’s the best in the business. Get his opinion. It will help. Good luck!

Of all the advice here THIS ^^^^^^

Please do this!

[Anonymous]

PP here, so glad to hear that baby is progressing well!!!

[Anonymous]

Anonymous wrote:This was my thread. I wanted to revisit this in case anyone happens upon the thread searching for multicystic dyslastic kidney (MCDK).

Thank you so much to everyone who reassured me at the time that things would be okay.

I had the baby in May and she is healthy and beautiful. She had an ultrasound shortly after birth, which indeed showed a nonfunctional, multicystic kidney. The other kidney that had appeared to have a duplicated collecting system on the ultrasound was actually normal. It was just a misdiagnosis on that side.

Baby had more imaging (VCUG and renogram) at 4 months and will have a third ultrasound before she is 1 year. In her second year, she will have 2 ultrasounds, and one per year after that. The prognosis is very good. The main thing with MCDK is keeping the good kidney healthy, which means protecting it from urine reflux. If the cystic kidney starts to cause problems, we can have it removed, but it is most likely that it will involute (shrink up and go away) on its own during her childhood.

At this point, her good kidney has compensated and grown large and is doing most of the work of 2 normal kidneys.

I remember how scared I was after the 20 week ultrasound so I really wanted to share this story in case anyone is in the same situation. Our baby is so perfect and just the light of our lives. I rarely think about her kidney issue unless we are discussing it with the doctor.

So glad it all turned out well. I realize yours was an old post, but in case anyone searches for duplicated collecting system later, I had a daughter who was born with that on both sides. She was diagnosed during pregnancy, and she also had an ASD (a hole between the top chambers of the heart). She was tested for several other abnormalities to see if she would fit a VACTERL diagnosis, but those were the two things found, in addition to a dual vessel cord.

It was so stressful and terrifying to not know how all of this would impact her life. Luckily for us, her ASD closed on its own. Her kidneys were fine, but her ureters had to be reimplanted into the bladder. That was a pretty quick surgery and recovery when she was 3 and she has follow ups for 2 years and now doesn’t need them anymore.

[Anonymous]

Anonymous wrote:OP here. Thank you, so much, to everyone who shared your stories. By last night, I had calmed down thanks to all of you. When DH came home from work, I shared this thread with him too.

Our appointment this morning with the pediatric urologist was beyond amazing. I have never felt so reassured leaving a doctor's office. The doctor let us know that he'd seen this kidney combo many times, that the multicystic kidney would not cause harm, and that anything that goes wrong with the duplicated system kidney is fixable with a simple surgery.

We left the appointment feeling over the moon and went out for lunch. What a turnaround. Thanks so much everyone.

Wonderful news!

[Anonymous]

Anonymous wrote:This was my thread. I wanted to revisit this in case anyone happens upon the thread searching for multicystic dyslastic kidney (MCDK).

Thank you so much to everyone who reassured me at the time that things would be okay.

I had the baby in May and she is healthy and beautiful. She had an ultrasound shortly after birth, which indeed showed a nonfunctional, multicystic kidney. The other kidney that had appeared to have a duplicated collecting system on the ultrasound was actually normal. It was just a misdiagnosis on that side.

Baby had more imaging (VCUG and renogram) at 4 months and will have a third ultrasound before she is 1 year. In her second year, she will have 2 ultrasounds, and one per year after that. The prognosis is very good. The main thing with MCDK is keeping the good kidney healthy, which means protecting it from urine reflux. If the cystic kidney starts to cause problems, we can have it removed, but it is most likely that it will involute (shrink up and go away) on its own during her childhood.

At this point, her good kidney has compensated and grown large and is doing most of the work of 2 normal kidneys.

I remember how scared I was after the 20 week ultrasound so I really wanted to share this story in case anyone is in the same situation. Our baby is so perfect and just the light of our lives. I rarely think about her kidney issue unless we are discussing it with the doctor.

Hey OP if you’re still around thank you for updating after she was born. They apparently couldn’t see my baby’s kidney well at the 20 week (and didn’t tell me) and then at the 32 week they couldn’t see it again. I wanted to see how you and your kiddo are doing and in my anxiety and bawling constantly because maybe I did something wrong I found your nice words and updates.

[Anonymous]

Aww yay op!!