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Hemophilia group

My little boy has Hemophilia I would love to talk to other parents with a child with the same condition

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Newborn screening

Haemophilia testing unborn baby

I had quite a horrible day today. I’m 37 weeks pregnant, I’ve taken part in a study where they give you an MRI to see if you may have difficulties during delivery. They called me today to tell me that they found a brain bleed in my baby. They kept saying how they were so sorry to be breaking this news to me making it sound even scarier.

After a few hours of me absolutely breaking down thinking the worst they called again later to discuss with my partner where they’ve then said it’s just an old tiny bleed and insignificant.

They touched on a likely cause of it like a blood disorder. Now this is where I’m really quite angry but not sure if I’m over reacting or it’s just not common practise… during my first midwife appointment going through medical history I told them that my partner has haemophilia, they put it on my notes but not once have I been offered fetal testing or even explained the risks of an unborn baby having the condition or that certain methods of delivery wouldn’t be possible. A quick google says they offer this testing between 11-20 weeks and it helps identify if they are at risk of things like brain bleeds…

My question is - were you told the risks, were you offered testing and how was this managed with you. I don’t know if this is standard or something that my hospital just missed

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Newborn screening

Giving Birth to mild Hemophilia A baby boy

Hi,

I am pregnant with a baby boy who is having mild hemophilia. I just wanted to know how the life looks like for the babies with mild hemophilia A?

I am so scared and would really Appreciate the advice.

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Disabilities

New on here, mom to a 26yo on Hemlibra

Hello all, happy to join the group! My son (26 years) has severe hemophilia A and is on Hemlibra.

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Words of encouragement

Newest member James

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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Childcare

Hemophilia Diagnosis

Just wanted to introduce myself. My husband and I just found out our 6 week old has Moderate Type A Hemophilia. While we saw it coming because I’m a carrier, it has put a big weight on our shoulders because we hoped he didn’t get it like my sister’s boys didn’t. Just looking for a community to walk this new journey with.

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