Home » 

Ethan

USA

My son Ethan was diagnosed with Hemophilia b just after his 1st birthday when he tore his frenulum while learning how to walk. He bled for days (so gross!) and we were told many times this was normal by a dentist, but when we kept calling back they finally referred us to a pediatric dentist who knew almost immediately he had a bleeding disorder. He was .1 point away on his hemoglobin level from needing a blood transfusion when this happened. Talk about scary!

We had our suspicions that something wasn’t normal when his bruises would have a hard center and when even the smallest bruises would take over a week to go away. We were continually told this was normal by his original pediatrician and that these were calcium deposits. Now I know better to trust my mom intuition! Being a first time parent is hard and it’s taken a long time to NOT trust a doctor’s first opinion. If you’re reading this-do your research on everything if you have even the slightest doubt the diagnosis is wrong.

Skip forward 3 years and Ethan is thriving! We do prophylactic infusions of factor 9 every 2 weeks through a port at home. We can almost tell immediately when he is in pain, has a bleed, or when a fall is -just- a fall/injury and there’s no need for an ER visit. I’m thankful everyday for our access to this treatment!

Share this story / Partager cette histoire / Compartir esta historia