Multicystic Kidney

Ratana - posted on 03/21/2013

Hi everyone, I am glad that I got to read all of these posts. I thought I was going crazy and just an over pariond mom. I was told at my 26 week ultrasound that my baby has a MDKD and was put on high watch. I delivered her 4 weeks early, 5lbs 1ounce. At 6 months she had her first ( so far only) UTI but also febrile seizer. I remembered calling the dr and telling them my baby just had a seizer in my arms. Last year they saw that her bad kidney has grown and she went under a neurology research study. The hardest part was when they sedated her. This year they just did an ultrasound and is found urine in her good kidney. I am anxisiouly waiting for her Ndr to call. Please can someone tell me that is no cause for an alarm?
My daughter is 4 and looks incredibly healthy, but she is starting to question, has anyone told their child and how did you approach it?

-waiting

Rina - posted on 01/24/2013

Hi my son age 7 has d same prob on his right kidney n now started to have hypertension. I am in loss

Val - posted on 11/25/2012

Julia - I think you just need to let her know that you will be there with her and will help any way you can. You don't have the answers and there's only so much you can do for her and Willow. Just be a shoulder she can lean on, be hopeful, encouraging, loving, all those things as mothers we do anyway. I will keep you and your family in my thoughts and prayers.

Julia - posted on 11/25/2012

My case is a little different my daughter is 27 yrs old and she is a mom of willow (5yrs) old. She has been diagnosed with acute renal kidney failure. There has been many emotions coming out of all the family members. My beautifull daughter has been so amazingly strong for all of us as we'll as for herself. I have been struggling though. I want so much to know what to say, what to do and mostly how to let her know I want to be there by her side through this. It has been one week now my other children have stayed away. I've been reading that this is common. So my ? Is how can I help make this easier for all of us compassionately for them all mostly my daughter suffering.

Val - posted on 11/07/2012

To all who have responded to my original post....I am so glad to have "met" all of you through here. When I originally posted, I felt all alone...like no one else had a child going through the same thing. There were no other posts even remotely close to what I was experiencing. I am not normally one to start my own post (I am usually more of a lurker...lol), but felt compelled to put this out there and have been so blessed with your responses! To hear all the similar stories is amazing...I am comforted to know that I not alone. While I have not always responded...I have read each post. Please continue to be there for each other and offer your support and encouragement to each other! As for me and my boy...he is happy and healthy...can't believe he is gonna be 5 in December! He has not had to see his urologist/nephrologist for over 2 years now or better...and has had no problems. I am so thankful we made the decision to have the surgery...and I am so thankful for each day with him and each of my kids...they are definitely a blessing from God! I hope my story can give you hope and comfort if you are currently going through this yourself. Good luck and God Bless each of you on this journey with your precious kiddos!! Val

Val - posted on 11/07/2012

Hi Leah, I was induced with each of my 4 kids and wouldn't want to do it any other way! With my son, I was induced a month early, mostly because I had gestational diabetes that wasn't controlled the best and we knew that he was already a healthy size. I did have an amnio done before to make sure he was ready and he was, so he was born a month early at 7 lbs 15 oz and had absolutely no problems other than jaundice which was to be expected. I wouldn't worry so much about 37 or 38 wks...if that's what your doctor wants to do, I'm sure the benefits outweigh any risks of doing so. Good luck to you and your little girl...will pray for safe delivery and the multicystic kidney to shrink on its own!

Leah - posted on 11/07/2012

It's so nice to find this! I found out at my 20 wk u/s that my little girl has a multicystic right kidney. They literally scared me to death trying to explain it all to me and I cried for a week straight. I am now 28 weeks and have had 2 ultrasounds since finding that the multicystic kidney has not changed in size and the "good" kidney is still unchanged and working properly. I am now on the hunt for a pediatric urologist and nephrologist. Everyone's stories are so comforting and I know that more than likely all will be okay. I do have one question to throw out there... My doctor is wanting to induce me at 37 or 38 weeks due to her maybe having an enlarged abdomen (which is apparently common with kidney problems). Did anyone else have this done? I was really planning on doing everything completely natural and being induced was not in my plan, so anyone's insight on this would be great.

Joanne - posted on 09/05/2012

Hi Val, my baby is 4 months and in the same situation... We are waiting to see if the kidney will dissolve on its own, or whether it will enlarge.. If it enlarges we were told it's best to have it out, when he is 12 months old, to decrease risk of cancer... It's super scary sending your baby into surgery but I feel I would do it, especially if he could get renal cancer!!!

Rhiannon - posted on 05/03/2012

Hi all i had a growth scan this morning and discovered my baby girl has a non-functioning right multicystic kidney, i'm being referred to a urologist who i will hopefully see next friday, the midwife said the left kidney was larger than normal to compensate and that the right kidney would shrink and be absorbed back into the body, although i've been reassured it still a BIG shock, the baby's belly is measuring 36 weeks i'm 33 weeks ,is this down to the kidney problems do you think?

TAMMY - posted on 03/02/2012

Hi,

My son is now 15 yrs old and when he was a baby he to had a muticystic kidney but it was found when I was 3mths preg. with him. The doctor waited until he was a year old to remove left kidney. It had no functioning what so ever and was full of cysts. When the doctor removed it he said it was the size of a thimble. So it had shrunk quite a bit. My son did pretty good with the surgery. But now there's even a big concern. He now has a bubble bulging from the right ureterocele and he will have to have surgery for it but right now the doctor wants to see him more often to keep his eye on it. But in the mean time we have to keep our eyes on him to make sure he doesn't get sick or doesn't have any problems urinating. I'm a nervous wreck right now because I didn't think that he would have to have surgery again. You never know what to expect in this kinda of situation. But trust what you feel in your heart and also think about what's best for your child. Good luck on what ever decision you make.

Elizabeth - posted on 01/03/2012

Sorry just read the rest of the posts glad you made you decision and i hope he is going from strength to strength. Just wanted to ask some questions. I am currently 10wks pregnant with our 2nd child after having a miscarriage 4months ago back in July, i am very nervous as have had a bleed which i had with both previous pregnancies and am worried about this baby getting multicystic kidneys again, i was told it was very rare for any future child to get it but i cannot relax ath the moment, i still havent seen my midwife as they lost my notes so have now had to make my referral again, i just need to be reassured as am not enjoying my pregnancy as am on tender hooks all the time. It has taken me 3yrs to get pregnant and dont think i can go through the heartache we had with our first baby again

Elizabeth - posted on 01/03/2012

hi
My son was born 4years ago and we found out he had a multicystic kidney at 21wks gestation. He was born 11wks later due to foetal distress. He spent 4wks in the nicu and had recurrant scans etc to see size of kidney etc. At 3 months old he had a dmsa scan which showed his left kidney was healthy and the right kidney and multiple cysts on it and had no function. We were told his bad kidney was very large and would probably need removing which was quite rare, They did tell us it would probably be done in the first year of his life, it wasnt. He had ultrasounds every 6 months and another dmsa scan finally at around 2 1/2 years of age they decided to take it out as the largest cyst was measuring 10cm across, this made his other organs be pushed to the side, he finally had his operation in April 2010 and has gone on from strength to strength, we were allowed to see the kidney afterwards and it looked like a large icecream cone with loads of cysts covering it and the large cyst the ball of icecream. I would do what you think it best for your child, i am so glad we did this for our son as he is a strong little boy now and has had no other problems with his remaining kidney. Good luck with your decision

Chante - posted on 12/05/2011

my daughter is 8 months old and she has the same prolbem, we found out when i was 20 weeks pregtant with her, we have been having checks up every 3 months on her kidney.. it keeps doing the same thing you said your sons is doing.. right now she looks like to me she is retaining water.. the doctors are not listing to me... gonna be a very mad mom if they dont listen.. did you have the same prolbem.. thank you for listing

Lindsey - posted on 06/14/2011

Hi my name is Lindsey, I've been with my boyfriend for 4 years. When I got pregnant I was on birth control. At the beginning of my pregnancy they thought I was going to miscarry and wanted me to basically get an abortion shot. I didn't let them and my baby was normal and I didn't loose him. When I was almost 20 weeks I went to get an ultrasound to find out the sex (which we weren't able to) the following week I had to go into my dr's office because he said the ultrasounds weren't normal. He refereed me to a specialist and they said my baby had multicystic dysplastic kidney, which basically my babys kidneys were made up mostly of cyst's and he wasn't urinating so he wasn't making any amniotic fluid. So his kidneys were enlarged and his lungs were small. They gave me a choice and said I could carry him full term or be induced, either way he wasn't going to survive because he had the disease in both kidneys. If it was just one, he probably could have. So they induced me last Thursday ( June 9,2011) and I had the love of my life Zachary James Jankowski II on June 10th. He was 1lb .06oz and 10 1/2 long. He didn't make it, and we're waiting for the results from his autopsy to come back. This has been the hardest thing I've ever had to do, but I believe I made the best choice for my son. I was just wondering if anyone has had this happen to them? And if you were able to have a successful pregnancy after? If someone could help me I'd really appreciate it. I have tons of support from my family, its just hard when noone exactly understands how I feel.

Naomi - posted on 03/02/2011

Hi y'all...I brand new here, my husband found this site and suggested I take a look. I was to told at about 20 or so weeks into my pregnancy that my baby had MCKD but on both kidneys and that there wasn't a good chance for her my 1st little girl....I was devastated...but the u/s dr. who came in and told me all these bad things was wrong, my daughter didn't have it on both kidneys just on the left...so of course it was monitored and the right kidney was doing it's job extremely well...after I delivered she started seeing her renal dr. and was told that the bad kidney would eventually shrivel up and dissapear before she was 1...well my daughter turned 3 on Feb. 27 the kidney has srunk a little at first but now seems to be growing...we have u/s every 3 months and dr. visits every 6 and for the past 2 u/s it's increased in size, not by much but it has, my dr. kindof erks me alittle because her excuse is well maybe the u/s tech is pressing to hard and which causes the kidney to spread and measure bigger...this is the second time w/the same excuse...I don't won't surgery for my daughter but at the same time I feel my dr. isn't takin it serious enough or maybe it's just me...she is the dr. right?? Anyways my daughter is perfect you would never know there was anything wrong with her....I just wish my dr. would make a decision or give me a better answer to why things aren't going the way they're suppose too...well I just wanted to share my story....THANKS for listening!!

Amanda - posted on 12/17/2010

My son has MCKD as well they noticed it early in my pregnancy and when he was about 3 weeks old he got some tests and they thought it might be something more serious but thank God it wasnt and after more careful looking they saw that nothing has changed much and we dont have to do anything serious. However I think it causes him pain he screams a lot for no aparent reason and we are told its not colic does anyone elses kids have pain from this?

Val - posted on 04/16/2010

Hi everyone! It's been a long time since I've been here...thought I'd give a little update on Trenton. We did have his right kidney removed in November 2009. Surprisingly, the removal of his kidney was not our main worry that day...but whether he would have another major asthma attack. In September, we almost lost Trenton when he had an asthma attack....we knew he had asthma but did not know really what we were looking for in an attack and how bad it could be. The doctors basically told us he could have stopped breathing at any time. Scary stuff. So after a 2 night hospital stay...less than 2 months later, we're back at the same hospital for the kidney surgery and all we can think about is our first stay. Luckily, the surgery was fine. We were very impressed with everything...the doctors, nurses, everyone kept us informed every step of the way, including during the surgery. After the surgery, Trenton was pretty groggy but was not in any pain. We were able to hold him almost right away. He did not want to move a whole lot until after he was unhooked from all the monitors, catheter, etc. If I remember right, the catheter was the last to go and as soon as it was gone, he was on the move!! So good to see!! He was all over the place. He came home two days after his surgery...we took him to his sister's volleyball game directly out of the hospital, then went home and he was rolling on the floor wrestling with his 4 year sister! It was amazing to see such a remarkable recovery from such a major surgery! He only took pain meds for two more days after the hospital (4 days after surgery) and then was fine without it. He has been back to the doctor and has been given the all-clear. We will go back for another checkup after a year's time, so this coming fall. I still worry about the effects of only having one kidney and will it "wear out" quicker than normal meaning will he need a kidney transplant someday? I know he can't play regular sports like other boys...that's a little hard for me to accept, esp. since our girls are highly active in most sports. I am extremely grateful and thankful that Trenton is alive and well though, so I try not to worry about the trivial things that will be different about his life. I keep reminding myself that God is in control and has provided me this amazing gift to be a part of my children's lives for as long as it is His plan. So most days, the kidney surgery is a very distant memory for us, but his 3-4 inch scar serves as a gentle reminder to cherish every moment. I hope each of you are cherishing your special gifts as well! Please continue to share your stories as I know I have enjoyed knowing I'm not alone in this and I know there are more of us out there. Every story has touched my heart and I hope and pray all your little ones are doing as well as Trenton is right now.

Rikki - posted on 07/26/2009

Hi,!! my son now three was born with a displastic multicyst lef kidney which has now shrivled up but we have a ultra sound every six months to make sure it hasnt regrown if it regrows it will have to be removed for cancer sake.Its really nice to know there are other parents out there to talk to and swap information.

Val - posted on 07/25/2009

Hello all! I haven't been on here for awhile, but just wanted to say that I love that there are so many of us here sharing our stories. Not that we all have to go through this...but that we can support one another during this time of uncertainties and worries. Melissa, I especially wanted to thank you for sharing your story about life after the surgery. A few weeks ago, we finally made the decision to have Trenton's kidney removed. His surgery is scheduled for November 5th. His non-functioning kidney wasn't really getting bigger but it also wasn't getting any smaller. And since ultrasounds are not an exact science, I also didn't fully trust that it wasn't getting bigger. Anyway, I was able to talk to another mom who lost her baby from a different type of cancer after going through chemo and the mom was also undergoing chemo herself at the time. I asked her what she would do in my situation if she was faced with the uncertainty of surgery vs. potential tumor and without any hesitation she told me she'd choose the surgery. Part of her rationale was that when you have other kids, you have to consider them as well as yourself too. How disruptive it would actually be to our family if it did develop into tumors and it can be easily prevented by just removing the kidney that doesn't work anyway. It all seemed very clear to me after that and my husband and I agreed that was the best decision. We know there are still risks associated with the surgery, but we really feel like this is the right thing to do. So hopefully all will turn out well...I am very encouraged by your story Melissa and I hope that I will have a similar story to share in a few months!

Melissa - posted on 05/08/2009

Hello! My name is Melissa, and i am also new here. My daughter has, or should i say had, multicystic renal dysplagia. During a routine ultrasound, the Dr. found a cyst on Mariah's left kidney. No worries, he said, for now. When she was born( at 32 wks) the docs ran alot of tests and told me the kidney was completely non-functioning and covered in cysts. I paniced!!!! My O.B referred me to one of the best pediatric urologists in the state. He explained that in most cases like hers the dead kidney tissue eventually will basically disintegrate and reabsorb back into the body and we would just monitor it. Ultrasound after ultrasound the largest cyst kept growing. Including the cysts, the size of her bad kiney was almost 5 times the size of her good one and was starting to push on other organs, and give her a big pot-belly. After many talks with the docs and carefull consideration, we decided to have it removed, she was 1 1/2 yrs old. She is now a very healthy 4 yr old, with no pot belly, a very small scar, and our final checkup with the urologist will be in February of 2010, unless she shows signs or symptoms that there is a problem ( and she hasn't since the day of her surgery), in fact, they let me take her home the next afternoon and she was climbing on my furniture like nothing ever happened. I know that this decision is yours to make, but I hope mine and mariah's story will help you in some way. May god bless you and your son. Sincerely, Melissa Carroll

Katey - posted on 05/04/2009

Hi Jenifer,thanks for your reply means alot nice to hear fromsome who has gone through the same thing 1st hand,glad your little boy is doing well as well
katexx

Jennifer - posted on 05/02/2009

Hi Katey! I have been in your exact same shoes, with the same questions. My little guy is now 2, we were told that he had MCDK - Right as well. Your son should be seen and followed by a pediatric nephrologist when he born. They will keep close tabs on all things that relate to the kidney. My son spent the first week in the NICU while the ran tests and did ultrasounds to make sure everything was good. For that first year of his life we saw both a pediatric urologist and nephrologist about every month. By nine months, we were every three months and now at two years we are once a year. It can be overwhelming and so forth - you will get a quasie education in kidneys! One suggestion that I do have is make sure that you have a great pediatrician that can be the "conductor" of this orchestra. It gets a little overwhelming with the specialists. It was nice for me to have my kids pediatrician be the go between. He was able to give me the details in layman's terms! Afterwhile, getting the info from the specialist wont be so omg - what did she just say, but it took me 18 months to get there! All a learning curve. What you can and should expect from the left kidney is for that it to grow larger and start compensating for the right kidney. Eventually, the right kidney and the cysts will grow smaller and smaller to be virtually nonexistent. My son, did not have his right kidney remove, it is now about the size of a small marble. Good Luck! You will be fine!! Jenn

Katey - posted on 05/01/2009

Hi all I had a ultrasound on wednesday and we found out we are ahing a little boy we also foung out that he has a multicystic right kidney we were reasured that every thing else including the left kidney looked comptley normal...
we have an appointmoent on thursday with the maternal fetal unit on thurday so im very up in the air about whats going on as you all know...
my question to you all is that if the good kidney looks fine now does that mean it will stay good or may it to crow the cysts....
will my baby boy be ok????
thanks katexx

Jennifer - posted on 04/19/2009

Hi Candise, I am so sorry to hear about the loss of your little guy. When we found out the my son had MCDK it was in the one kidney only. I freaked - but they told me to be thankful that it was not in both as there was no way that he would have survived. My OB must have had everybody under the sun looking at his ultrasounds to confirm. They told me that if it was in both that I would have to talk about the other options and they were quite frank with me that those options would be the toughest decisons one would have to face. Again, I am so sorry to hear of your loss. God Bless. Jenn

Candise - posted on 04/18/2009

Hi I was just wondering if any of your doctors suggested termination? I dont mean to sound negative. at my 20 week scan my doctors told my my little boy had MCDK in both kidneys and there would be 0% chance of survival and that I may get sick, and suggested that I terminate. I had 2 opinions and both said the same. I feel guilty everyday that I mad the decision and he is not with me, he was stillborn at 6mths, I have 2 healthy girls now, but my son is always in my heart, hope u dont mind me asking.

Jennifer - posted on 02/23/2009

Hi Guys!  My little one kidney wonder just turned 2 yesterday!  What an amazing journey we have all been on.  Please consider joining or helping your state's National Kidnyey Foundation.  I have met some wonderful people through there.  We are doing the kidney walk on March 14 - should be a lot of fun!

Shantelle - posted on 02/23/2009

Hi guys! My 5mth old boy has MCDK on the right kidney. His too, was diagnosed at the 18wk scan, I am now going through all the tests and his scan is on 6th March to see what's happening and if it needs removing anytime soon. It worries me that there are so many problems that could happen over the following years, (like kidney infections) but am also appreciative of the fact that it could have been alot worse. And that worst possible case, it gets removed, that the body only needs one.

These groups are proving fantastic for support and information! I am a member of 2 groups on Facebook and some discussions include what advice ppl get from their peds (that I never got told) like Ibuprofen should be avoided. I asked my ped and he agreed that it should be avoided if possible.

Thanks for sharing your stories, it's calming to know the surgery isn't so bad.

Val - posted on 01/06/2009

Thanks for sharing your stories...it's so good to know there are others out there with similar situations. My son's kidney appears to be shrinking, so that's good. We'll go back for another ultrasound in a couple months...not making any major decisions till then. Here's to a happy and healthy New Year for all of us!

Melissa - posted on 01/06/2009

my second child was diagnosed with multicystic kidney at my 18 week scan we had alot of trouble during the pregnancy with it decreasing by the time she was born 5 weeks early at 4 and a half months they decided to remove what was left i found her health improved after the surgery and she is now going to be 8 in march at the time they did this new procedure so they only made a small insicion on her back which is barely noticable now so one would assume this procedure is now common practise keep ur chin up things do improve

Jennifer - posted on 12/18/2008

Wow! Your story is much like mine! My son was born 2/07 and his right kidney was nonfunctioning due to MCKD. We were scheduled to have the kidney removed because the cysts kept growing. However, after a lot of prayers, the kidney reduced in size and is virtually non existent today. My son will need to be followed by a nephrologist for the rest of his life, but that is ok! We were only going to remove the cystic kidney because it kept growing. All the experts that we had involved in my son's care said that otherwise there was no reason to remove it. I loved that I found this group!

Val - posted on 11/24/2008

Hi Katrina - thanks for responding...sometimes I think we must be the only ones going through something like this. My son was also diagnosed early in my pregnancy, but luckily my doctor was pretty good at reassuring us so I guess I didn't worry so much then...just left it in God's hands so to speak. We do know that TJs right kidney is not functioning at all, which may have been why the cysts kept getting bigger. The pediatric urologist and our pediatrician told us the kidney should deteriorate on its own from non-use....but when it kept getting bigger and now staying roughly the same size, that's when we started worrying more. That and when the dr. casually mentioned the risk of this malignant tumor (Wilm's Tumor). Both doctors at this point suggest waiting for the next ultrasound to see if the cysts decrease in size, but then also say they understand our dilemna. I too would like for them to just make a very definitive statement - this is what you need to do - however I also understand that they are so afraid of the liability and also there is just no way of really knowing what the right thing to do really is. I think it's just about getting all the info you possibly can, taking the time to think things through, praying, and then trusting God with your child. (at least that's what we need to do). Thank you for sharing your story and insights with me...you've made me think about this in a different light! Keep me posted on your little girl and I'll do the same.

Katrina - posted on 11/23/2008

Hi Val. My baby girl (4 months) was diagnosed with a kidney cyst at our 20 week ultrasound. The doctors originally were worried that the cyst would continue to grow while she was still in the womb and would get so big that her heart couldn't grow naturally. It really was 20 weeks of hell not knowing if my baby would make it. Luckly in the end the cyst didn't change size during the last 20 weeks of pregnancy and hasn't since. We are still undergowing tests at the hospital to find out if she is able to keep the kidney or if it will need to be removed. They have found out that her good kidney is doing 83% of the work load which is pointing towards taking out the bad kidney so that it can take the whole 100% which it is more likely to be able to do while she is so young. I just find the whole thing so confusing and would prefer it if the doctors just did what they thought was best rather than asking me to make a decision about something I know nothing about. They are ment to be the experts aren't they?

As for the risks of surgery. Yes there are risks involved but our little girl has already had a general anesthetic and the anesthesiast told us that children respond better to a general than any adult would which was very reasuring. She was very groggy for 24 hours after the procedure but is now just fine. It's like it never happened. I guess when it comes down to it you can either risk the surgery where at least you know whaat to expect or you can risk finding out what these cysts can become. They may never become malignant but can you take that chance.

I really feel for you having to make this extremely hard decision. It's hard enough trying to do right by your kids but when there are medical problems it's so much harder.