How to deal with your baby having hydronephrosis
When you become pregnant, you hope for the best and assume everything will be perfectly fine. What happens when that isn’t the case? Sometimes everything isn’t perfect, there could be something slightly off with the development of your baby.
I can remember when I was told a few days after my 20 week ultrasound that there was something off with my baby. I was trying not to freak out. The worst part was not being spoken to by my doctor. I had called a few times and had to leave messages with the receptionist. Finally, I was called and informed my son had grade two bilateral hydronephrosis.
What the heck is hydronephrosis?
Hydronephrosis is a condition where urine overfills and backs up into the kidneys causing them to dilate. If you think about filling a balloon up with water, that is basically what happens to the kidneys. The severity varies and typically is classified by grades 1, 2, 3 or 4. Where 1 represents minimal dilation of the kidneys and 4 would be severe dilation.
Okay, now what?
Having your growing baby be diagnosed with hydronephrosis can be stressful to say the least. Depending on the severity, doctors will recommend different treatments. Since my baby still had time to go on the inside, monitoring was the course of action. Once a month I went to a perinatal specialist where I had an ultrasound done to measure any fluid in the kidneys.
There was nothing else to be done while I was still pregnant beyond monitoring. Once he was born, we had to wait about 3-4 weeks to get an ultrasound done. The results showed there was still fluid in his kidneys, so to a specialist we went.
Ghosts from the past
At this point, I was an emotional wreck, however I knew how to go into autopilot and the questions to ask. My eldest had a similar diagnosis, only instead of being discovered in utero, his was found at age three years.
My son’s doctor had him undergo a voiding cystourethrogram (VCUG) procedure the first visit. Then ultrasounds to monitor. If you were advised to have your child undergo a VCUG you can read more about that here.
Ray of Sunshine
My son’s doctor had told us that hydronephrosis was quite common in infants. About 1 out of every 100 pregnancies has hydronephrosis, which happens to be more common in boys than girls. The likelihood that both of my sons would have to see the same specialist for their kidneys when hydronephrosis is not genetic, well let’s just say I should play the lottery.
Fortunately, my sons are doing well. My eldest has had a longer road to travel whereas my youngest’s kidneys have spontaneously healed on their own. Knowing the journey and struggles, try not to jump to the worst case scenario if your child is diagnosed with hydronephrosis during your pregnancy. I know it is far easier said than done. Trust me mama, I have been there. Send me a message if you have some questions, concerns or simply need to vent to someone who understands.
Your child has been diagnosed with some form of kidney disease. The doctor says your child needs to have a voiding cystourethrogram or VCUG. They give you a little information and tell you to give them a call with any questions. Then out the door you go to schedule the next doctor appointment.
What is a VCUG?
Your child will be asked to change into a hospital gown. Then lay down on a special table with a special camera above it for images. The procedure will begin once a trained technician inserts a catheter into your child. Once the catheter is in, they will inject dye into the bladder. As your child lays on the table, images will appear on a screen.
The images will show your child’s urinary tract. The dye will slowly go into the bladder filling it completely. As this occurs, another technician in the other room will be taking pictures for the doctor to look at later.
Once the bladder has completely filled, your child will be asked to urinate. As they urinate the flow can be seen with the dye on the monitor. If there are any blockages or reflux from bladder to kidneys, the camera will reveal that. Once your child is done and the images have all been taken, you will be able to help your child get dressed then go see your doctor to discuss the results.
Both of my sons had to undergo a VCUG procedure. My eldest was three years old when he had his done whereas my youngest was a month old. Different ages that come with different levels of difficulty.
My eldest was at an age that he could easily communicate his feelings with words. Having him be aware of the catheter and the pain, yes there is some pain that goes along with it. Maybe the doctor forgot to mention that or was it in the fine print?
Hearing your precious child beg you to have the bad people stop hurting him, to save him. “Please mommy! Help me!” Will haunt you for a long time, even though you know this is a necessary procedure to find out what is going on in the inside.
As a parent we are supposed to protect our children. The saying this will hurt me more than you, has never rung more true than when you have to sit by and see your child in pain. I would rather have taken that pain on my own person than have my child experience it.
My youngest son also had the VCUG procedure done. I say thankfully he had it done at about a month old. Why do I say thankfully? Even though he cried when the catheter was put in as well, I didn’t have to hear the pleading words of “please mommy help me!” His went much faster time wise than my eldest son.
The VCUG procedure is an emotional rollercoaster. If your child is young enough, they will not remember the procedure, however if they are older, they will always remember. As a parent, you will never forget.
My youngest son has not recollection as he was only a month old. My eldest son unfortunately remembers everything. Every time we go back to that specific hospital for his yearly kidney check-up, his blood pressure starts to climate. He does not say it, however I know he is always nervous remembering.
If you find you have to take your child to get a VCUG done, know you are not alone. Let me know how your experience went. We are all here together making it through the messy adventure of parenthood.