In honor of Sepsis Awareness Month, I wanted to start to share some of our family’s long journey with Vesicoureteral Reflux (commonly referred to as VUR), kidney infections and urinary tract infections (UTI’s).
It all began with her 6-week shots (or so I thought!)
Like any new parent, I was terrified of taking my sweet 5-week old baby girl to get her shots. I didn’t know what to expect. I didn’t want her to bring her into the germy medical office at the beginning of flu season and I definitely didn’t want her to experience any pain or aftereffects of vaccinations.
The shots were actually much less traumatic than I had anticipated, and the nurses even allowed me to stay in the room after to nurse and comfort my baby for as long as I needed.
However, two days later she woke up in the morning and did not look right. Not at all. Her body was limp, and she would not nurse. I quickly found my baby thermometer (there is a lot of information about expensive thermometer’s, but this cheap Vick’s one is the only one that has been reliable for my family). I took her temperature – 102 under the arm. Oh, no! I knew this was not good for a baby this young to have a high fever. The first thing I did was call the doctor’s office where she had her vaccinations. “Could this fever be a result of the vaccinations?”. The nurse said it was unlikely as 48 hours had passed, but she told me to give it a bit and see if the fever came down.
That was the very first poor piece of medical advice I received for my daughter, but sadly, nowhere near the last. What I didn’t know then is that according to the AAP a fever in any newborn under 2 months is considered an emergency and needs to be treated as such. In newborns, a temperature over 100.4 is considered a fever, so we were already wayyy into serious fever and emergency territory.
Racing to the ER
As I paced back and forth holding my floppy baby, my Mama instincts kicked in. I packed a quick diaper bag, put my baby in her car seat and headed to the ER of the local children’s hospital. By the time we arrived and were seen, my baby was registering a temperature of 103 – things went into full panic mode. The ER staff was concerned about meningitis, an infection that causes inflammation of the membranes surrounding the brain and spinal cord and can be very deadly if not caught early. I was asked to leave the room so they could perform a spinal tap to check for infection.
They also took a urine sample to check for a UTI. At the time, all I could think was why are they checking my 5-week old baby for a urine infection – she is clearly extremely ill. All I knew in my basic knowledge of urine infections was that they usually effect adults and cause irritation and painful urination, but I was very wrong.
Kidney Infection
All the tests came back and luckily, she was clear of meningitis. However, her urine tested positive for a UTI, a bacterial infection in the urinary tract. Once the doctors were able to determine the cause of her illness, they started treating her with an antibiotic to help fight the infection and we were admitted to the hospital. The doctor told me that had I waited and not brought her in, the urine infection could have progressed into sepsis, a severe infection that can lead to organ failure and death.
Being a Parent Advocate
Over the next several days at the hospital, I learned a lot about the causes of UTI’s and kidney infections in babies and children. They can be a result of a structural/anatomy issue which she would need further testing to determine. I also learned a lot about myself and how our Mama bodies can kick into “fight mode” and require very little sleep and food to survive. Probably the most important thing I started to learn about was how to be a parent advocate for my sick little girl. Had I listened to the nurse and not brought her to the ER, the story may have ended differently. I spent the next several years pushing for answers, solutions, and better care and attention.
After two invasive surgeries, dozens of different antibiotics, crazy antibiotic-resistant infections requiring IV antibiotics and week-long hospital stays, we are extremely grateful/lucky/blessed that our almost 5-year old has now been infection free for over two years.
There were many, many times along the way that my husband and I had to advocate and fight on her behalf because she couldn’t talk or explain how she was feeling. There were many instances where the outcomes could have been different had we not pushed, advocated, asked for a second opinion, asked for additional testing and just demanded more and better care for her.
If anyone is going through VUR or any other childhood illness, please feel free to reach out or share your story in the comments section. Life-threatening childhood illness is the worst thing I have experienced as a parent, but it’s the support and knowledge of other parents has helped us learn to cope with the stress and to become better health advocates for our children.
