Our little Lizzie was born in April, 2007. She was a perfectly healthy, beautiful baby girl weighing 7 pounds and 7 ounces. She completed our family of four, and we could not have been happier. We had no reason to suspect that she had any medical problems, and had no idea what our future would hold.
When Lizzie was six weeks old, we decided to visit family about 3 hours away. My sister was having her fourth baby, and my brother’s wife had recently had her first. We had all shared our pregnancies together, and I was excited to have all the new babies together. I will forever be thankful that we made that trip.
While we were visiting, Lizzie slept through the night for the first time. She usually nursed at least once or twice through the night, so I was surprised that morning when I had to wake her to nurse. She ate well, and I chalked it up to excitement, and a change in schedule. We were all a little exhausted. She continued to sleep a little more than usual that day, but she seemed happy and content when she was awake. She wasn’t too interested in nursing, but she ate ok, and I didn’t think much of it. After all, she was a fat, healthy baby, so it just seemed like normal six week old baby stuff. That evening things began to change.
She felt a little warm, so I took her temperature, 99.5 F, nothing to really worry about, but I was becoming a little concerned. A short time later, when I felt her forehead, she seemed very hot. Her fever had spiked to 103 F and we went immediately to the nearest Children’s Hospital Clinic. It was only then that I began to realize how serious the situation was. Both the doctor and nurse were obviously concerned, and left the room to make phone calls. A few minutes later we were taken by ambulance to the nearest Children’s Hospital.
My world was turning completely upside down. I will never forget how absolutely tiny she looked sitting in her car seat, which was strapped to what seemed like an enormous gurney. It was completely surreal and absolutely terrifying. No one would tell me what might be wrong, or what we might be facing. I have never been as frightened as I was that night.
In just a few short hours our lives were changed forever. When we arrived at the hospital we were met at the door by a medical team and immediately taken to a room where they started an IV, and began running tests. I had no idea what to think or what to do. It was obvious that something was very wrong, and I had no idea what. It was all happening so fast, and no one could give me any answers. She was started on antibiotics, and by morning they had done multiple tests, chest x-rays, and a spinal tap. We were so disappointed and worried to discover that they still didn’t know what was wrong with our little girl.
The next few days were an exhausting roller coaster of ups and downs. They discovered a heart murmur, but were unsure if it was related to the infection or due to a problem with her heart. Her heart rate was very fast, and she was kept on a heart monitor much of the time she was hospitalized. For a while we were more concerned about her heart than her infection, and were thankful when her ekg later came back normal. The murmur was eventually attributed to the infection. We still weren’t sure what was wrong with our little girl, but we were beginning to rule out some of the more serious conditions, and the antibiotics seemed to be fighting the infection, whatever it was. Things were starting to look up.
On her fifth day in the hospital, Lizzie had a test called a VCUG and we finally discovered what had made our little girl so sick. Lizzie had a condition called Vesicoureteral Reflux (kidney reflux) and it had caused her to become very ill. A bacterial infection which had started in her bladder as a UTI had moved into her kidneys and was spreading throughout her body. Because she was so young, her immune system was weak, and the infection was moving into her other organs. We were very lucky to have gotten such wonderful medical care so quickly. I refuse to think about how different things might have been if we had been at home with just a small town hospital.
Too be honest, we were relieved when we first found out that Lizzie had kidney reflux. Yes, our child had a condition that can be very dangerous, but with early detection and the success of surgery, this was very good news compared to some of the other conditions that had been discussed . Lizzie had the most severe grade of VUR, and it was affecting both of her kidneys. We also discovered that she had an additional ureter on the left side and later found out that she had an additional ureter on the right side as well. We knew this might make surgery a little more complicated, but it doesn’t often cause a lot of complications. VUR would require her to be on daily antibiotics, and she would need surgery a few years down the road, but it was a very treatable condition, and we had time. We weren’t looking at surgery for another 3-5 years, and until then she would just require monitoring. We could handle this.
She was released from the hospital on daily antibiotics, and she recovered quickly. She was growing, gaining weight and tolerating the antibiotics well. We were surprised seven weeks later when her fever spiked again. Another trip to the ER revealed another infection. After talking to her urologist and having another ultrasound, we were confident that by changing her daily antibiotic we would be able to keep her healthy. She was now 3 months old, and could take a stronger, more effective antibiotic which would hopefully keep her urine sterile. We were again very hopeful.
You can imagine my surprise and frustration when just a few weeks later, she showed signs of another infection. Multiple doctor visits and catheters later, we discovered that this time she had a resistant strain of bacteria which would require a hospital stay for IV antibiotics. After the first few days in the hospital, we were given 2 options. We could spend the next 8-10 days in the hospital, or she could have a pic line put in. A pic line would be a longer term IV through which we could give her the antibiotic infusions at home. It was a pretty easy decision to make at the time. If you’ve spent any amount in of time in a hospital, you know exactly what I mean. The following Monday she had her pic line placed. As always, she was amazingly patient, and she did great with the procedure, she has always been such a little fighter.
Before leaving the hospital, we spoke again to the urologist, and agreed that it was time to schedule her ureteral reimplantation surgery. We expected to have 3-5 years to think about this surgery. Instead she would be having her first surgery when she was just 5 months old. I was so sad and so scared for my baby. She seemed so small and fragile. I dreaded every part of the surgery, but I was also hopeful. This would finally mean no more infections, no more hospitals, and no more antibiotics. Lizzie would be a healthy little girl and we could put this behind us. I was really looking forward to that new chapter in our lives.
Before we made it to our surgery date, Lizzie had another infection. Because of the infection , we were admitted to the hospital 24 hours before the surgery so that she could receive IV antibiotics to ensure the infection was gone. The next morning, our baby girl went in for surgery. She would have her ureters removed from her bladder and reimplanted back into the bladder in the correct place. The surgery is up to 98% successful and generally has few complications. Regardless of the statistics, as a parent you are always terrified. Placing your child in someone else’s hands for surgery is the hardest thing that I have ever faced. It was the longest 5 hours of my life. We hadn’t expected such a long surgery, but during the procedure, they found a fourth ureter which also needed to be reimplanted. I can’t even begin to describe the relief that I felt when the nurse came out to tell us that the surgery had gone well, and that we could see our baby.
Lizzie is an amazing little girl. She woke up from her surgery and began nursing right away. She struggled with dehydration and bladder spasms for a short time after the surgery, but after 2 days we were allowed to go home. The first week or so was hard, but I was surprised at how soon she was back to her happy, loveable, healthy self. The surgery was deemed a success, and we believed that our journey with VUR was finally over. Little did we know that our journey had just begun.
I was completely blindsided by her next infection. I just didn’t expect it. I remember taking her temperature and having this horrible feeling in the pit of my stomach. How could this be happening again? And why is it happening to us? After having another long conversation with our urologist, we were assured that this wasn’t terribly uncommon within the first 6 months after surgery. We shouldn’t worry just yet. According to him, her body just needed some time to heal. This infection could be from swelling, or bacteria in the incision, or any other number of things. He assured us that it didn’t automatically mean the surgery had failed. We needed to stay optimistic. Her renal ultrasound looked good, and we would once again try changing her antibiotics and crossing our fingers. I tried to be optimistic and believe what he was saying. I had done enough research to know that he was right, the statistics say 98% success rate. But it just didn’t feel right. Something else was going on with Lizzie, and I desperately needed someone to figure out what.
I have to admit, that I really wasn’t that surprised when, like clock-work, she got another infection 5 or 6 weeks later. I tried so hard to believe what they were telling me about the surgery, but I just knew deep down that something wasn’t right. Sometimes a mother just knows. After this infection, we did another VCUG to see if we could figure out what was really going on. Her VCUG revealed that she still had high grade VUR, and her diagnosis remained unchanged. Her ureters were now in the correct place, and there was no real explanation for why her VUR had persisted, or why the surgery had not corrected the problem. So now what?
Our next step was to begin rotating her antibiotics weekly to try and keep the urine sterile, which of course did not work. Now she was having increasing bowel issues and yeast issues, and by the time we turned around, she had yet another infection. I was at at the end of my rope. To make matters worse, this time it was another resistant bacteria which would require another hospital stay and another pic line. I couldn’t believe that we were right back were we started before the surgery. In all honesty, I felt like we were going backwards. We still had no resolution of the VUR, she had now developed mild hydronephrosis and an enlarged bladder and here we were with more questions than answers.
This time the pic line placement did not go well, and I vowed to do all I could to never be in this situation again. It was a horrible terrible experience and I was determined to find answers. We needed to be aggressive, much more aggressive. Each new infection could potentially permanently damage her kidneys and cause more complications. Studies show that kidney damage is most common in children under the age of 1, during active kidney infections. Lizzie was only 10 months old, and she was racking up the infections one after the other. Lizzie’s kidneys continued to look good on ultrasound, which we were very thankful for, but we also knew that one more infection could change that. We were desperate to find a way to keep her kidneys safe.
Our next step was to have a video-urodynamics study done. This test would show if there were any problems in her bladder that might be causing her reflux as a secondary condition. Much to our surprise, her bladder was working pretty well, but was grossly enlarged. It was so large, that the nurse actually stopped the test before the bladder was completely full, because she was afraid of doing damage. At this point, we decided that until we had more answers, the best way to keep her kidneys safe was to have a cutaneous vesicostomy put in.
When Lizzie was 11 months old, she had her second surgery which would include two surgical procedures, one to put a vesicostomy in place and another to administer a Deflux injection. The vesicostomy is a urinary diversion that would divert her urine through her abdomen so that urine could not reflux into her kidneys and cause damage. This way her bladder would remain empty, making it harder for bacteria to colonize and harder for urine to move into the kidneys. We were hopeful that this would stop her constant kidney infections, and buy us some time to find answers. The Deflux injection was done as a kind of Hail Mary. The hope is that it might reduce the reflux, by building a flap to prevent urine from entering the ureters. This is not commonly done for grade V bilateral reflux, but because she was already under general anesthesia with an incision in the bladder, we decided that there was little risk in performing the procedure, and we’re keeping our fingers crossed that it might even work.
The vesicostomy has worked better than we could have ever imagined, and has been a true blessing to our little Lizzie. Since her surgery she has not had a single urinary tract infection, which is obviously a huge thing for us. I can’t say it is always easy, but it is always worth it. Always.
Lizzie is about to turn four and she is doing great. Since her last surgery, we have continued testing and looking for answers. She had an MRI to rule out spinal abnormalities which can sometimes cause urinary problems. We were thankful when the test showed no abnormalities. She also underwent a DMSA scan which showed no significant scarring in the kidneys, which, too be quite honest is really a miracle. She does have some abnormalities in her kidneys. One kidney is much larger than the other, and the opposite kidney is being bent by pressure from her spleen. The good news is that the overall function of her kidneys is good. One is functioning at 41% and the other at 59%, keeping the overall function to 100% which is great! We recently had a scare with her blood pressure, but after further evaluation, we feel like it is remaining within the normal limits so for now we can let it ride, and just continue to monitor it. We also continue to monitor her immunity system. She has some mild immunity issues, but even her immunity issues have been significantly reduced since taking her off of daily antibiotics.
Lizzie still has an uncertain road and a long journey ahead of her. We have recently made the decision to take down her vesicostomy, and she will have surgery in June of this year. It was a big decision, but we feel like it’s time, and we are glad to be moving forward. Our hope of course is that when they take down the vesicostomy her bladder will work properly and that the reflux will have been corrected or resolved. Unfortunately we have no way to test either of those things because of the opening in her bladder, which is just a little ironic if you think about it.
Removing the vesicostomy will hopefully be a positive experience, but we have to also be prepared for the fact that it could mean that the infections come back. If they do? Well, we’ll cross that road if we get there. It certainly wouldn’t be the first time we’ve faced tough obstacles. For now I’m doing my research, looking forward with hope and expecting great things. I’m also making sure to take time out along the way for Lizzie and I to stop and smell the roses.
For more information on Kidney Reflux click here.