"Our son Ethan is the driving force behind our foundation"
My husband and I were so excited to know that our baby boy was on the way. My pregnancy was complicated and termed high-risk due to excessive water around the fetus called polyhydramnios. The excessive amniotic fluid had to be drained weekly through amniocentisis to prevent premature delivery. Due to the polyhydramnios, Ethan Daniel was born early at 36 weeks, 6.2 pounds. He was such a beautiful baby boy.
At about 3 weeks old, we noticed that he spit up more than normal, was jaundice and his condition progressed into repeated vomiting. Ethan did not gain weight well; he wet his diapers excessively and displayed a constant desire for thirst. Initially, doctors told us he was probably lactose intolerant, so we should switch the formula. Ethan was small and tiny compared to other children in both weight and stature. The pediatrician told us that Ethan was tiny because he was on soy milk formula and his vomiting was due to a condition called cyclic vomiting. We believed different; a Mother’s Intuition knew something was wrong with our baby boy.
During the first few years, Ethan got up every 2-3 hours, soaking wet from full diapers. At his first birthday, Ethan looked lethargic and endured an episode of vomiting that lasted for a period of 3 days. We took Ethan to see numerous doctors; no one seemed to know what was wrong with our child. The doctor’s consensus was that Ethan will be tiny and small like his mother, with no underlining problems.
We continued to fight for his life for the next four years, from ER to ER, from doctor to doctor with no solution to his medical ailment. No results, nothing changed, his symptoms were getting worse. Ethan was not eating well, his thirst increased immensely. Ethan was still vomiting, he was urinating very often, he got up 2-3 times per night to drink water and use the bathroom. He was craving salty food and only ate the salt from pretzels.
Ethan was very skinny and short. He was not growing well at all compared to other children his age on the percentile rankings. At age 4, Ethan was wearing size 24 month old clothing. Ethan got very sick again. He ran an extremely high fever and appeared lifeless. We rushed Ethan to the hospital; once again the doctors put him on an IV. Unfortunately, this time he got sick with pneumonia and doctors could not get the fever to come down for days. I began to cry and scream. Watching my son's pale tiny body suffering was painful and I begged the doctors to listen to me. The medicine he was on was not working. I reiterated the symptoms that my son exhibited time and time again. We suffered through Ethan's first years without any support or information into his disorder. Therefore, we decided to help others by starting the Bartter Syndrome Foundation to offers others a support channel and give insight into this rare genetic kidney disorder.
Liliya and Daniel Hoffman