MCDK kidney cysts in baby.

veganmum2be · Dec 5th, 2017, 14:10 PM

Anyone experience this? Was told there was something wrong and proceeded to be sent to consultant and scanned for another hour.

Baby has a functioning left kidney but right is enlarged, none functioning and full of cysts. Multicystic dysplastic kidney.

Was told it can mean increased chance of certain disorders but declined amnio.

Was told baby has a good chance and lots of people live with one kidney but they are monitoring every 4 weeks which concerns me and I obviously discovered the horrors the internet has to offer in relation.

ClairAye · Dec 5th, 2017, 15:15 PM

Not this but other kidney problems, the extra scans for me would not be concerning, it's great they are keeping an eye on it.

I've seen a lot of kidney kids since having mine (who is now 5) and a lot who are doing awesome with one kidney, a non-functioning kidney or other problems. There will likely be tests done after birth to check kidney function and probably look for anything else within the kidneys.

I'd suggest joining a Facebook support group, I'm in a few and they have been a life-saver, honestly. Instead of the almost constant doom and gloom of Google searches you will get stories and advice/information from parents who have been and are going through the same thing. A lot of the boys in the group for what my son was born with are living mostly normal if not totally normal lives but Google search it and you'll read the horror stories only.

I hope you can find some support.

veganmum2be · Dec 6th, 2017, 00:17 AM

Thanks Clair
Do you know of a particular group on Facebook? I had a look and joined a few but not sure they are active anymore.

Thanks for your words, I know the evils of google I wish I could refrain.

Yes they said tests at birth, antibiotics and then further tests/possible operation.

ClairAye · Dec 6th, 2017, 04:06 AM

They tend to be for very specific things rather than just kidney problems in general but I have seen it mentioned in 'Parents of Children with Hydronephrosis' I'm sure you could join for some info.

The tests etc are hard to go through but generally easy with a little baby as they tend to lay quietly or sleep lol. My son had tests/ultrasounds and one trip to theatre between 4 & 5 weeks old then another function test at 3 monthts (plus regular ultrasounds and other tests since). I don't know how long antibiotics are for with this particular condition but my son was on them from 6 weeks to 4 years, some kids are on them for just a few months.

If you have any questions about tests etc as you learn more you can also pm me if you like.

I didn't find out until my son was a few weeks old but I know it's a scary and confusing time.

lalila0007 · Jan 9th, 2018, 13:32 PM

I realize this post is a month old but I haven't been on here in awhile. My daughter also has a cystic, non-functioning kidney. Her left kidney is the non-functioning one and the right kidney appears to be doing fine. I am also seeing a specialist for extra scans every 3-4 weeks on top of my regular OB appointments. I was also told we would be seeing a pediatric urologist as soon as she is born so they can do tests, determine needed treatments, if any, etc etc etc. It is so scary to not even really know how to prepare for this. I try to focus on the fact that lots of people live with only 1 kidney and have no health issues. I have also read that this isn't that uncommon. About 1 out of every 1000 babies are born with only 1 functioning kidney and that before ultrasound was part of the normal pre-natal care, most of these babies never knew they were missing the kidney until later in life when it was found some other way.

veganmum2be · Jan 22nd, 2018, 13:01 PM

Thankyou for replying (:

We were told one in 4300 chance of this.

Have you joined the Facebook group for MCDK? There’s a few if you search but one useful one I am in is MCDK awareness with lots of members. It’s helpful reading others experiences.

We’ve become more at peace with it for now, last scan the cysts had grown but only in proportion to everything else. Next scan is next week so hoping for similar news.

Good luck! (:

Dec 5th, 2017, 14:10 PM	1
veganmum2be Other BnB Addict Join Date: Nov 2009 Location: Middlesbrough Posts: 4,870	MCDK kidney cysts in baby. Anyone experience this? Was told there was something wrong and proceeded to be sent to consultant and scanned for another hour. Baby has a functioning left kidney but right is enlarged, none functioning and full of cysts. Multicystic dysplastic kidney. Was told it can mean increased chance of certain disorders but declined amnio. Was told baby has a good chance and lots of people live with one kidney but they are monitoring every 4 weeks which concerns me and I obviously discovered the horrors the internet has to offer in relation.

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Dec 5th, 2017, 15:15 PM	2
ClairAye Mum (Mom) BnB Elite Join Date: Nov 2011 Location: Scotland Posts: 10,521	Not this but other kidney problems, the extra scans for me would not be concerning, it's great they are keeping an eye on it. I've seen a lot of kidney kids since having mine (who is now 5) and a lot who are doing awesome with one kidney, a non-functioning kidney or other problems. There will likely be tests done after birth to check kidney function and probably look for anything else within the kidneys. I'd suggest joining a Facebook support group, I'm in a few and they have been a life-saver, honestly. Instead of the almost constant doom and gloom of Google searches you will get stories and advice/information from parents who have been and are going through the same thing. A lot of the boys in the group for what my son was born with are living mostly normal if not totally normal lives but Google search it and you'll read the horror stories only. I hope you can find some support.

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Dec 6th, 2017, 00:17 AM	3
veganmum2be Other BnB Addict Join Date: Nov 2009 Location: Middlesbrough Posts: 4,870	Thanks Clair Do you know of a particular group on Facebook? I had a look and joined a few but not sure they are active anymore. Thanks for your words, I know the evils of google I wish I could refrain. Yes they said tests at birth, antibiotics and then further tests/possible operation.

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Dec 6th, 2017, 04:06 AM	4
ClairAye Mum (Mom) BnB Elite Join Date: Nov 2011 Location: Scotland Posts: 10,521	They tend to be for very specific things rather than just kidney problems in general but I have seen it mentioned in 'Parents of Children with Hydronephrosis' I'm sure you could join for some info. The tests etc are hard to go through but generally easy with a little baby as they tend to lay quietly or sleep lol. My son had tests/ultrasounds and one trip to theatre between 4 & 5 weeks old then another function test at 3 monthts (plus regular ultrasounds and other tests since). I don't know how long antibiotics are for with this particular condition but my son was on them from 6 weeks to 4 years, some kids are on them for just a few months. If you have any questions about tests etc as you learn more you can also pm me if you like. I didn't find out until my son was a few weeks old but I know it's a scary and confusing time.

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Jan 9th, 2018, 13:32 PM	5
lalila0007 Mum (Mom) Active BnB Member Join Date: Aug 2011 Location: Alabama Posts: 764	I realize this post is a month old but I haven't been on here in awhile. My daughter also has a cystic, non-functioning kidney. Her left kidney is the non-functioning one and the right kidney appears to be doing fine. I am also seeing a specialist for extra scans every 3-4 weeks on top of my regular OB appointments. I was also told we would be seeing a pediatric urologist as soon as she is born so they can do tests, determine needed treatments, if any, etc etc etc. It is so scary to not even really know how to prepare for this. I try to focus on the fact that lots of people live with only 1 kidney and have no health issues. I have also read that this isn't that uncommon. About 1 out of every 1000 babies are born with only 1 functioning kidney and that before ultrasound was part of the normal pre-natal care, most of these babies never knew they were missing the kidney until later in life when it was found some other way.

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Jan 22nd, 2018, 13:01 PM	6
veganmum2be Other BnB Addict Join Date: Nov 2009 Location: Middlesbrough Posts: 4,870	Thankyou for replying (: We were told one in 4300 chance of this. Have you joined the Facebook group for MCDK? There’s a few if you search but one useful one I am in is MCDK awareness with lots of members. It’s helpful reading others experiences. We’ve become more at peace with it for now, last scan the cysts had grown but only in proportion to everything else. Next scan is next week so hoping for similar news. Good luck! (:

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