This is James and I’m his momma Michelle. James was born on June 6 and diagnosed with Severe Hemophilia A on June 9 after his heel prick wouldn’t clot in hospital. It’s likely little James is one of the 30% of random X mutations since I have no familial history of hemophilia (will be tested in a few months to check). We are still processing what this means for James and for our lifestyle moving forward. It’s a lot to take in but we have an incredible team at BC Childrens in Canada that are helping us every step of the way. We are scared but hopeful for the future.
Just wanted to say hi.
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Welcome, Michelle and James! We had no family history, either. We found out I was a carrier when our now 3 year twin boys were diagnosed at a year old after one of them had a gtube placement and hernia repair surgery. Hemlibra has been amazing for us! We've only had one bleed after that first bleed that led to diagnosis and it was a nose bleed from a darn Covid test and was before starting Hemlibra! Since we've started Hemlibra we haven't had any issues!