Newborn w/ Possible Kidney Problems. ... - Parents of Childr...

Parents of Children with Kidney Disease

900 members211 posts

Newborn w/ Possible Kidney Problems. What can I expect as a parent?

goggles18 profile image
7 Replies

I have a one week old who may or may not have kidney issues (lots of testing to do still) we know one kidney is smaller, and creatinine levels were slightly elevated. I am just trying to learn as much as possible. What is it like to raise a child with kidney problems? How is the lifestyle different than a normal kid?

Written by
goggles18 profile image
goggles18
To view profiles and participate in discussions please or .
7 Replies
Lifealysis profile image
Lifealysis

Well being a person who grew up with this same problem, you can have somewhat of a normal life. But it really does depend on the underlying problem, of what caused or what is causing the kidney disease in the first place. Mine was more severe, and I would of lost my other kidney no matter what, knowing what I know now, later in life. But, if your child has one working kidney still, they can live a perfectly normal life as long as they take care of it, by not doing anything too crazy, to possibly damage that kidney. But, the Doctors (if they are good ones) will tell you as the parent to be very cautious about raising your child when it comes to sports, and physical activities. You didn't mention if you had a boy or a girl, but being a boy, I always wanted to ride motorcycles, play football with my friends, etc etc... Doctor's insisted into my mom's brain that I never ride a motorcycles, or play football, because the one working kidney could be damaged in any of these activities, and then I would have to live on Dialysis. I had to live on Dialysis anyhow, after 17 regardless, so later in life I was able to ride motorcycles, and do what I like, because now I had no kidneys to damage. You still have lots to learn about your situation, but from what you stated so far, it sounds like your baby will do just fine. Anyone can live with just one kidney, and live a very normal life without medications or complications. Just teach them young, how to be healthy, eat right, and if they are going to want to play some type of sports, make it no contact, or low contact sports, (maybe no Karate? Where they can be kicked in the kidney ) and wear extra protection or gear, so that kidney is always protected if they decide they like Skateboarding, or snowboarding.

Celtic profile image
Celtic

Hello goggles, and firstly congratulations on the arrival of your new baby,

I’m sorry to hear that you have such worries about your newborn but, from what you say, it sounds as though no actual diagnosis has yet been made so please try not to worry too much (difficult I know) as you more than likely may be doing so unnecessarily.

Meanwhile, it may help you to know that I had a kidney removed when I was 12 years old and I am now 78! I was beset with urine infections from a very young age and when they finally discovered that the root of the problem may lie with one of my kidneys they removed it and I never looked back. At the time of surgery, my Mum was told that my kidney had, in their words, “been, paralysed from birth”. I take that to mean that it had never worked and was small in size. Probably these days they would refer to the problems caused as ‘reflux’. During the following years I played sport, I danced, I skiid and I had a completely normal life,

However when I was 64, a then undiagnosed autoimmune illness led to me taking anti inflammatory medication to relieve my pain. At the time I was also put through many scans with contrast to try and reach a diagnosis. Whether it was the anti inflammatory, the dye used in the scans or the autoimmune illness itself that caused the damage, I will never know but they are all known to cause damage to kidneys. since that time my remaining kidney has lost a fair amount of function, although at present is stable at around 37 to 44% function.

I do hope that this helps to put your mind at rest, added to which these days there is so much more known about our kidneys. surgery is so much easier, mostly keyhole as opppsed to the very long incisions and scarring of years ago. So hopefully your baby will be found to need no further intervention but if it is deemed necessary then rest assured that all can and will most likely turn out well.

2kidsandapup profile image
2kidsandapup

Our daughter was born with kidney disease with a duplicated system on one side and bilateral hydronephrosis. Her condition is a little more complicated, but one thing her nephrologist has driven home is diet. Definitely talk to your specialists as your little one grows! I know for our daughter (and I believe most kidney patients) we are on a low sodium diet.

Stay strong 💪🏻

mikseta profile image
mikseta

My son (6 month old) is born with single functioning kidney. His other kidney is multicystic with no function, which was confirmed after scan called dynamic scintigraphy (MAG3).

His good kidney is not perfect as well. It should be larger than normal kidney is, because it suppose to work for two, but it is just the size of a normal kidney. His nephrologist does not give us any hope that it will last for a lifetime, so I have pretty much the same worries as you do.

Anyway, I wanted to let you know that his creatinine was elevated since he was born, but it was trending down all the time. It came to be normal (on the upper side of normal) when he was 4 month old, and it stayed there to this day. I might imagine what are you going through, it is really tough, but you should know that kidneys are still maturing and there is a chance for improval. And you said slightly elevated, whereas my son's numbers were through the roof. I think you have every reason to believe it will come down to normal.

BearMama0321 profile image
BearMama0321

Hi there,

Wanted to check in to see how your son is doing now? Hoping all is well. We’re at the beginning of this journey and very scared.

All the best!

goggles18 profile image
goggles18 in reply to BearMama0321

We’re hitting the 7month mark in a few days. 3 months ago her kidneys were measuring normal! Both in normal range. They were however both still echogenetic. Her kidney labs (creatinine) have also been much better and normal but she does have to be on a salt solution due to low sodium levels. We have another appointment next week but so far we still don’t have an answer on if she has a chronic kidney disease of some sort or not. The doctors are hopeful that it is just kidney immaturity and she will grow out of it. I’m so sorry you are facing the unknown. Besides getting lots of labs done and needing to take a sodium solution twice a day she has been great and healthy. I hope you are given answers soon. Hugs to you.

BearMama0321 profile image
BearMama0321 in reply to goggles18

That’s wonderful news! Good luck to you and your little one.

You may also like...

Share Your Experience- Babies born with low/no functioning kidney

pregnant with a baby boy who has one kidney that has an obstruction between the kidney and bladder...

coping with anxiety and depression due to a child needing a kidney transplant

Anyone have a child awaiting kidney transplant? How do you deal or cope with all the emotions, not...

Chronic Kidney Disease

days old to remove the blockage. Bc he had this blockage it caused him to now have Chronic Kidney...

What has your experience with the healthcare system been like?

understanding of childhood kidney disease and the symptoms impacting your child?

How does kidney disease affect your child’s day-to-day life?

what activities does kidney disease affect the most? What things does your child find most...