Around 20 weeks into my pregnancy, we embarked upon our appointment for the standard anatomy scan. I was feeling a little anxious but mostly excited to see our baby. Having previous pregnancy loss, I felt certain anxieties upon beginning the scan. I have found that pregnancy loss can really affect thinking and emotions surrounding pregnancy, but that is a post for another time. At about 20 weeks gestation, we learned that our baby had a condition called hydronephrosis. I went into a panic about it, searching desperately to find out information about the condition and anecdotes to find assurance that my baby would be safe and healthy. After a few weeks, I felt better about it, but I wish there were more personal accounts with the condition available to assure families and provide education based on their experiences. I remember that I was able to find a ton of clinical information about the condition, but very little recounts of actual experiences. Experiences matter because the condition can mean nothing at all, or it can potentially be serious and cause many challenges for children.
Hydro-what? What is hydronephrosis?
Hydronephrosis occurs when the kidneys become swelled with fluid. If you break down the word, it means something like “water kidney.” The kidneys can swell with fluid as a result of many conditions, most commonly a blockage in the ureter or reflux, where urine flows backwards up into the kidneys. It is not a common condition in infants, and is found in 1-2% of all pregnancies but accounts for at least half of all abnormalities found at a 20 week anatomy scan. The condition essentially affects how urine drains from the kidneys, which can make infants and children more likely to develop urinary tract infections of the bladder and kidneys. Most commonly, the condition resolves on its own with no intervention necessary and does not cause any complications. Sometimes children will develop urinary tract infections as a result of poor urine drainage.
How did the diagnosis affect my pregnancy?
After the initial diagnosis, I was referred to an obstetric specialist for follow up ultrasounds. I had a few extra ultrasounds from about 20-37 weeks to check on the condition and determine whether it was resolving or progressing. One of the main concerns with hydronephrosis in utero is that it (rarely) can lead to low amniotic fluid levels because the baby may not be producing enough urine. Throughout the ultrasounds, the condition worsened from mild dilation in one kidney into hydronephrosis in both kidneys. The specialists termed this mild to moderate. During pregnancy, this is all that I needed to follow up on and it did not cause any health complications for us.
What medical care was necessary after birth?
Before my daughter was born, I contacted our pediatrician and set up the initial paperwork to be referred to a specialist for some newborn testing. I also had an appointment with a great urologist to discuss the condition and the treatment plan after birth. As soon as possible after she was born, we needed to have a kidney ultrasound and VCUG (voiding cystourethrogram) to get a clear picture of her kidneys and determine if she had reflux. We had our pediatrician set up referrals for these tests that were sent out right after she was born. Within the first two weeks after birth, we were able to have a kidney ultrasound and VCUG done. The kidney ultrasound is really easy, and the baby needs to lie on the table on their tummy and back while the technician takes images of the kidneys, ureters, and bladder. The VCUG is more intensive and tests for reflux of urine back into the kidneys. In this test, a catheter is inserted into the urethra and liquid is inserted into the bladder. As the bladder fills and empties, the technician takes x-rays of the bladder as it functions. This imaging reveals how the urine moves through the urinary tract. This test was hard to go through with a new baby, but once it was completed she was totally fine and I nursed her right after in the office. It is not painful, but is uncomfortable. This test was worthwhile to rule out the possibility of urine reflux and other abnormalities.
The ultrasound at this time revealed moderate hydronephrosis and the VCUG revealed that there is no reflux. Our urologist urged us to schedule appointments every 3 months or so to follow up and make sure the condition is not worsening. He stated that he will not recommend any intervention unless the condition gets considerably worse. We currently visit the office for periodic kidney ultrasounds, which she seems annoyed with nowadays but are really no big deal.
How has it affected my baby?
Overall, it never affected my daughter until she was about 4-6 months old. We were having challenges with weight gain, and she was the same weight at 2 months as she was at 6 months old (she was 14lbs). I worked with a lactation consultant and our pediatrician, as well as a GI specialist and nothing nutritional was making any difference. She wouldn’t nurse more often and generally seemed uninterested in eating. I always felt like I had to convince her to be interested in nursing, day and night. It was exhausting. I had many experiences where I was told I must not be making enough milk for her and that it was “okay to supplement, many women have to at this age.” It was a very hard time for me, because I never felt at all that I didn’t make enough milk for her. I had the opposite problem, where she would not take any more milk. So my body was doing what it was supposed to do by making the amount of milk that baby will drink. It is basic supply and demand. Essentially, I felt like I was losing it and my postpartum anxiety kicked into overdrive and it was a really terrible and dark time for us. The GI specialist labeled my daughter with a diagnosis of “failure to thrive” and wanted us to complete a wide array of testing. We ran some blood work and noticed that her white blood cell count was high. With knowledge of her hydronephrosis, the specialist recommended we test her urine for a urinary tract infection. Sure enough, the urinalysis test strip lit up like a Christmas tree for nitrites, which revealed that she had an infection. We went to our local children’s hospital and completed a catheterized urine sample to submit for a culture, which then revealed very high amounts of many bacteria – primarily E. coli. Finally, after months of what was thought to be a breastfeeding or nutrition problem, we had a solution!
Since we now know that she can potentially continue to have urinary tract infections because of this condition, we decided to purchase urinalysis test strips to test at home. When she is fussier than usual, I place a bag inside her diaper cover to catch urine to test. It’s very easy and can be done quickly and cheaply. It is easier to test at home than to bring her in to a doctor’s office to test on suspicion. It is important to remember that children with hydronephrosis often have white blood cells and trace amounts of blood in their urine as a result of inflammation. We did a baseline urinalysis as soon as she was healed to understand what levels are normal for her in order to track any changes. When bacteria are present that cause a UTI, they convert nitrates in the urine into nitrites. In urinalysis, high nitrite levels reveal a strong probability of an infection. If she has high levels of nitrites, then we will take her to see our pediatrician. We will then have a “clean catch” catheterized urine sample taken (uncomfortable but necessary) to determine the bacteria causing the infection to match with an antibiotic. I am not a proponent of taking antibiotics liberally, but at this time I am unaware of a natural solution that will help cure a strong urinary tract infection and prevent it from spreading to kidneys and causing damage. We use natural medicine to try and boost immune health and avoid infections through nutrition and chiropractic care.
Since she never had a fever with her infection, it is important for us to look at behavioral signs. We have been working to learn sign language with her so she can communicate her feelings with us more easily. We have also been using chiropractic care monthly to help ensure that her spine and nervous system are aligned to promote immune system health. My hope is that we remain infection free and she outgrows the condition over time.
Hopefully this post can shed some light on what the condition may be like for your child and help put your mind at ease. Do you have experience with hydronephrosis? What was your experience like?