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Here is our personal experience with having a son with multi dysplastic kidney. I wanted to share our story in case anyone has a baby in utero and was just diagnosed with this to set your mind at ease and give you our experience. 🙂
Something is Wrong at the Ultrasound
I remember laying on the bed as the nurse did the ultrasound on my pregnant belly.
This was my third pregnancy and I could tell something was wrong.
She stopped being as chatty with my husband and I as she focused in on my baby’s kidneys. It was mainly one she was focusing on and it was easy to see the tissue looked like it had large almost fluid like circles in it. I didnt’ remember seeing those in any of my other kid’s ultrasounds.
The ultrasound tech couldn’t tell me anything official. I think she may have called another nurse or doctor into the room. They couldn’t tell me exactly what was going on, just that I needed another appointment at a different office with better ultrasound machines and told me not to freak out or to google anything.
Up until this point, my husband and I had been planning to have a homebirth. I hadn’t found a homebirth midwife I liked as much as my hospital midwife so I was still looking. With the health of my baby being a concern we decided to stay with my current midwife and have a hospital birth.
My midwife is actually the reason why we had this ultrasound in the first place. She told me she personally would have an ultrasound just in case anything was wrong she could then be proactive about such as delivery at a certain hospital if the baby had a heart problem.
With the cyst-like appearance on my son’s kidney, we needed to have several ultrasounds.
We Find Out it’s Multi Dysplastic Kidney
At one of these ultrasound appointments, our specialist gave us the news that our youngest son whom I was still pregnant with had multi dysplastic kidney on his left side.
What this means is his left ureter didn’t open up while in utero. So fluid built up in that kidney. This fluid shows up on the ultrasounds as cysts in his kidney.
After I found out a name for what our son had, I googled to try and get some first-hand reports and didn’t find much info at the time.
When I first found out, my biggest questions were would he be all right and what did this mean for his quality of life.
Our Son is Born!
After being born he looked perfectly healthy. You couldn’t tell anything was wrong with him. He ate, pooped and peed just like any normal baby.
Before they would allow him to be discharged from the hospital they did a VCUG on him. This would tell them if he had vesicoureteral reflux (aka reflux from his bladder).
I had read beforehand to ask for a neonatal nurse to do the catheter since it’s more difficult to catheterize an infant than an older boy. My husband was with him during this whole procedure, so I can’t remember exactly how he said it went, but if I remember correctly he actually slept through most of it. And the neonatal nurse had a problem cath’ing him, so the nurse who does these procedures regularly did it and she was very skilled.
In our case what they did was catheterize our son, then push some fluid through the catheter into his bladder. They are checking to see if fluid from the bladder will back up the ureters to the kidneys.
We Find Out He Also Has Vesicoureteral Reflex
The VCUG showed us that our son had reflux of his bladder at a level of 3-4 on a scale up to 5.
Our specialist strongly recommended having him circumcised after finding this out. I read up as much as I could and canceled the appointment to circ him at the last minute.
Our pediatrician is a doctor who I trust completely, so I went in and talked with him. This appointment made me realize how important it is to trust your child’s pediatrician. Not blindly trust them, but find someone who has the same core beliefs regarding kids as you do. We changed pediatricians a couple years earlier because I didn’t trust our pediatrician.
Our pediatrician drew me a picture showing the damage leaving our son intact could do and why he agreed with the specialist. In our talk, our pediatrician said he kept all his sons intact and would normally recommend keeping any boy intact, but because of our son only having one kidney and such bad reflux he would recommend having him circ’d.
My sons’ specialist also wanted our son on antibiotics. I know and knew the damage that antibiotics do to the gut. I didn’t’ “fight” him about this, but I did question this advice and asked questions about it and brought up some homeopathic treatments to use instead. Our specialist was adamant our son needed antibiotics because of the reflux.
So my son was on antibiotics from the first day he was born until he was around 3 years old.
If you haven’t tried giving a tiny infant medicine, it isn’t all that fun and gets old quick.
I thought it was hard getting him to swallow the medicine as a newborn.
Then he got older and gained control of his hands. He would swat at the medicine.
There was one time that he hit the bottle of antibiotics and spilled out about half of it.
We tried to make it fun and cheer and clap for him after taking it and that worked for a bit. Honestly, you just gotta try and make the best of it and try and make it as fun for the baby as possible. Make it into a game and keep it fun as long as you possibly can. When it’s no longer fun for the baby and he doesn’t want anything to do with it, it is hard and frustrating.
Our pediatrician had him on a probiotic from day 1 to try to minimize the damage to his gut.
If our son wasn’t getting enough probiotics, he would have explosive diarrhea that would be all up his back and as you know, with babies it’s always at the worst time possible, haha.
These explosive episodes would always happen just as it was time to leave to drop my oldest son off at school. The school wasn’t all that forgiving of our tardiness.
My son would also get yeast diaper rashes because of the antibiotic. I bought athlete’s foot cream in bulk from Amazon to try and keep it under control. Another thing is I would bump up the amount of probiotics he was getting to help fight the yeast from the inside.
Follow Up Appointments
He had ultrasound appointments for the first 3, 6 and 9 months. The at a year, year and a half, then year two and year 3.
The ultrasound appointments went OK. If you have to do these, make sure to bring favorite toys and new toys. This will help keep your baby’s attention on something else other than moving around. 🙂
The tech doing the ultrasound would also have a basket of toys and sometimes these worked better than the toys I brought.
With these ultrasounds, they are looking to make sure the kidney that had the cysts on them is growing smaller. At least that is what they would look at when we went. They also made sure his other kidney was growing larger to compensate for the one kidney not working.
He had another VCUG when he was 4 to check on his reflux and kidney while they were there.
First off, the nurses were AMAZING! They were wonderful with our son and trying to make sure he was comfortable. There was a therapy dog there that day who was super sweet that my son enjoyed petting.
He was given a special stuffed dog that he treasures to this day. They also had some other small toys he could play with while he waited.
He was given some drugs to relax him. The drugs took about 20-30 minutes to kick in. He acted like a little-drunk dude while on them. He would have little drunk like smiles, telling funny jokes that only made sense to him and that he thought was hilarious, and he also had slurred speech. They took him for a “ride” on the hospital bed to the room the VCUG would be done in.
When we got to the room he didn’t want to be on the bed at all. He wanted me to hold him. He fought HARD to get off the bed. They needed him to lay still while they pushed fluid into his bladder and needed him to expel it.
He’d been potty trained for quite a while by this time and had no plans on having an accident. They also needed to take pictures while they did this.
The nurses and I had to hold him down on the bed while he fought us as they took pictures/did the procedure. I can’t remember how many nurses we had help with this, but they had to call in extra nurses to help.
I think our son is probably different than most patients who need to go through this? There was a chance we were going to have to come back and redo everything and the head nurse was saying how if we had to she was going to put in the notes that our son needed more medicine for relaxing. But, luckily we didn’t have to.
It turns out that his reflux was gone and his left kidney has been completely absorbed by his body, which was the best case scenario. Yay!
This means he “graduated” from the urologist. He will start seeing a nephrologist when he hits puberty.
Our urologist has said not to have him ride dirt bikes. He has the all clear to play football and pretty much anything else that he wants to play or do.
To be honest, most of the time I forget he has multi dysplastic kidney. Other than proactive treatments and procedures there hasn’t been anything that would indicate any kidney/bladder problems.
His doctor appointments are normal, except they do take his blood pressure each time and do a urine sample. Plus, he is just starting to age into having well checks every other year, but he will keep having them yearly.
One other thing – because of his reflux UTI’s were a big concern. If he had any fevers over 101 degrees I was to take him into the doctor to have him checked for a UTI. We had a few appointments for this the first year, but overall it was pretty uneventful.
If you have any questions about this, feel free to ask below and I’ll answer to the best of my ability.