Living with Pediatric Urology Issues

By the time my second chld, Noah, was 3 months old, I was very discouraged that he cried constantly. Though I breast fed him, he suffered with diarrhea constantly. As a result, we took him to the doctor constantly in an effort to fix the problem. I chose his pediatrician on the basis that she had been both my sister’s and my doctor growing up. I had and still have great respect for her, however, Noah’s illness put our relationship to the ultimate test.

Since Noah always had runny bowels, he had horrible, HORRIBLE, unimaginably HORRIBLE diaper rashes. We took him to the doctor for the rashes, we took him to the doctor for the upset stomach. We would be given various prescriptions and we used holistic remedies as well. At the suggestion of the doctor, we took him off the breast milk and tried several different kinds of formula, but nothing helped. He kept crying and I did too.

My husband said to me one day that he thought Noah might have trouble peeing because Noah would grunt whenever he would void. I didn’t really understand that notion and subsequently dismissed it entirely. Fortunately, my husband wouldn’t back down. He mentioned his impressions when we took Noah to the doctor yet again at 7mos old. The doctor, exasperated and tired of seeing us in her office every week, offered to test him for a urinary tract infection. The test proved that Noah did not have a UTI When that test came back negative, the doctor told us maybe “Noah is just spoiled.”

A couple of weeks later, Noah caught a cold and ran a fever of 103. He wouldn’t eat, he wouldn’t drink and he slept constantly. Poor baby. What’s worse - the incessant crying or the absolute, silent lethargy of an infant? His daycare too was concerned about his limited intake and decreasing interactions. When I took him back, one of the junior doctors took over the case as the usual doctor was out of town. She called me with results of Noah’s blood work saying the only thing she found surprising was that Noah was anemic. I asked her if that was the reason he was sleeping so much. Her answer was no and that it was nothing to be concerned about. I told her I was indeed concerned because he wasn’t eating enough and only sleeping. She angrily retorted that he was getting enough if he had any diapers that were wet or soiled.

Oh how untrue! And this is why I’m writing: to help those of you caught between knowing in your soul that something is wrong and being coldly dismissed by the doctors. Mothers and fathers stand your ground! You know your baby better than anyone else, with or without a doctoral degree, you are blessed with a wisdom that transcends book-learning. You have the deep love that comes with parenthood to guide you.

That same day, we looked for another doctor. We called Dr. Beena George in Memphis, TN and took the earliest appointment we could get for the upcoming Monday. By the day of the appointment, Noah wouldn’t even sit up or hold his head up. He slept for at least 20 hours a day and when he was awake, he would cry the quitest little whisper of a cry. When the doctor saw Noah, she agreed with us saying, “Anyone can look at him and tell something is wrong.” My husband and I were so grateful to FINALLY have someone willing to observe the very facts we’d been screaming month after month. The new doctor sent him to a hospital lab for every blood test possible. They told us to expect a call from the doctor as soon as the results were in. Later that night, Dr. George called us and gave me instructions to take Noah to the emergency room where she was faxing his results and that they would take it from there. She was very matter of fact about it all but wouldn’t tell me exactly what was wrong, just that Noah needed to be seen by someone else right away.

My mother met us at the emergency room where a team of doctors worked on Noah in the ICU after telling us that Noah was suffering from acute renal failure. His calcium and potassium levels were so high because of his grade V reflux, his heart was just hours from stopping. My heart fell through the floor.

I went to my makeshift prayer closet - the bathroom- where I pleaded with the Lord for my son’s life and the ability to walk out of the hospital WITH MY CHILD IN MY ARMS once the doctors finished whatever they had to do.

Noah turned 5 years old Februar 16, 2008. He had surgery for posterior urethral valves shortly after that first day in the emergency room. We also found out that his diarrhea was a result of the kidney dysfunction as too was the anemia. Anemia is one of the first signs of kidney problems but the doctor(s) at the first office missed that along with a slew of other clues.

Fortunately Noah has suffered only one urinary tract infection since being dismissed from the ICU. He is on a daily regimen of antibiotics, growth hormones and blood pressure meds. His reflux has gone from a 5 to a four in the last 1.5 years. He is scheduled to have urethral reimplantation the second week of April. The damage done by the neglected reflux has severely altered his kidneys, bladder and ureters. However, we are praying and believing for an extended miracle. After all, his whole life is a miracle itself. I am grateful for all the doctors involved - even the ones who missed the problem - as we’ve all learned from each other.

I learned to be more assertive about my instincts and stand my ground as a mother. Just wanted to share with you so that you’ll never doubt the validity of your own concerns for your child. Trust your love. Trust your heart. It’s the most telling evidence you have, it’s the most powerful voice your child has too. Had we trusted our own instincts a little more, we would have pushed harder and not let the doctor keep turning us away. Noah would not have had to suffer as intensely or as long as he did. Eight months is an eternity for a baby who can’t speak and just think, he had the valves en utero! He had always been miserable. The point is believe in your parenting prowess.