For the first day of National Kidney Month, I’m sharing Rowan’s diagnosis.
When I was about 20 weeks pregnant with Rowan, he was diagnosed with LUTO (lower urinary tract obstruction), also referred to as BOO (bladder outlet obstruction). LUTO is a blockage in a baby’s bladder that restricts most or all of the flow of urine out of the body. It varies in severity from requiring minimal treatment after birth to causing serious kidney problems that require surgery. In Rowan’s case, and in most boys with this condition, there is a thin membrane which blocks the urine. This is called PUV (posterior urethral valves). Unfortunately, Rowan’s diagnosis was severe and caused serious kidney problems which resulted in multiple surgeries.
On Rowan’s MyChart account (an online chart where we can see Rowan’s medical records and other medical info), he has 15 different diagnoses. Some of them include Preterm Birth (32 weeks), Pseudo Prune Belly Syndrome (also known as Eagle-Barrett Syndrome), Anemia, Bronchopulmonary Dysplasia, Posterior Urethral Valves, Grade 1 Intraventricular Hemorrhage, Congenital Hydronephrosis, Pulmonary Hypertension, Vesicoureteric Reflux, Secondary Hyperparathyroidism, Obstructive Sleep Apnea, and Chronic Kidney Disease. Most of these sound like another language and I still have to google some of them to remember exactly what they are. Since Rowan’s main diagnosis is Chronic Kidney Disease, I’m going to go into more detail on that and save the rest for another day!
Chronic Kidney Disease (CKD) means your kidneys are damaged and can't filter blood the way they should. The disease is called “chronic” because the damage to your kidneys happens slowly over a long period of time. Kidney disease may cause complications like high blood pressure, anemia, weak bones, and nerve damage. Kidney disease also increases your risk of having heart and blood vessel disease, and may eventually lead to kidney failure or end-stage renal disease (ESRD), which requires dialysis or a kidney transplant to maintain life.
Rowan was already diagnosed with ESRD and is on peritoneal dialysis for 12 hours every night. When he is big enough, he will get a kidney transplant. A child must weigh at least 20 lbs to have a transplant because they will most likely be receiving a kidney from an adult. Rowan is currently about 16.5 lbs so he is getting close, but his growth has been slow the last couple of months. Doctors are estimating that he will be ready for a transplant at about 18 months old, but there are a couple other surgeries that need to be done prior to transplant to get his body ready for a new kidney.
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