I was 20 weeks pregnant when we first found out our baby boy was having health issues.
Hydronephrosis, is what we were told.
It’s a condition that affects the kidneys, and his weren’t functioning properly. He was monitored until delivery when we found out by ultra sound his kidneys were now clear. However, he was born with a severe right inguinal hernia. He had the repair at four weeks old, and did well.
Over the next few months he seemed to develop fine besides being extremely fussy. At five months he began having gastrointestinal problems and was started on medication, that he is still on today. He was seven months when the fevers, rashes, fungal, bacterial and viral infections began. Over the next seven months we were in and out of doctors offices, urgent cares, and emergency rooms on a weekly basis. Always hearing,” Oh, must be a virus” or “he must be getting a cold” never getting any tests to check anything.
Then, at 14 months I noticed he now had the left inguinal hernia again. At fifteen months he had the repair. This time was different. He suffered complications and was FINALLY admitted. Dozens of tests were done finding he had several abnormalities in his blood. Severe Chronic Neutropenia,Lymphopenia, and Anemia, were just a few issues found.Since then it has been a traumatic and frustrating five years of testing, procedures, surgeries–during one of which we almost lost him– infusion treatments, hospitalizations, and more health issues. And… no diagnosis.
However, through this journey I have found support through many foundations and organizations that have helped me keep the strength to be my sons #1 advocate. Though the struggle of finding a doctor may seem endless, I know we will get there. To any one who is going through a similar situation, never give up. Educating the need for change, and the fight for life is in our hands. With so many conditions being misdiagnosed or undiagnosed We must be the voice for each other.