Myself dx while preg, my 16 yo had it, 4 yo has trait And found out my mom is the one that past it down :)

My 16 yo son was dx with sickle cell trait with his new born screening. I just knew it had to be a mistake since we were the first born at a new labor/delivery hospital. Long story short-- sure enough it was confirmed. We knew either his dad or myself gave it to him, but neither one of us got tested. Fast forward 11 years-- I got preg and could NOT get my hemoglobin up and was on verge of getting blood/iron transfusions. Referred to hematologist, informed her of my son and she immediately said 'I bet you are the carrier and can't believe no one has ever tested you!' Well- mystery was solved and durning my whole preg--I did the iron infusion. My pediatrician said that the chances of my newborn would be slim -- guess what -- she has the trait too . This led me to more curiosity and my mom decided to get tested and she has it too. She is 72 and I can't believe no one had ever caught this with her blood work, but I'm assuming it's a specific test. This does explain maybe some of my mom's kidney problems, swelling legs (which I've inherited) and the pain when someone just touches or climbs (my four year old) on my legs/- it hurts so bad and I bruise so easy. I'm glad to know there is much more awareness regarding the trait because when my son was born, doc said it was no big deal -'was like some have trait for brown eyes vs blue eyes). Boy was he wrong. Thank you for this board.

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  • Oh and for record-- Caucasian family contrary on misinformed people who don't understand :(

  • I'm not surprised no one picked it up as it's presumed only black people can have sickle cell trait, when in fact anyone who has an ancestor who originates from an area with mosquitoes can have it so you can be black, white or Asian.

    The Royal College of Nursing recently said in their conference they need more training on sickle cell but it seems some doctors do as well.

    I hope you were given cards in case you or your children need general anaesthetics, as it tells the anaesthetist to be careful.

  • Hi Maria,

    Yes, you're right, it is a specific blood test, so it often doesn't get picked up unless they're looking for it.

    In the UK, we now test all pregnant women if they're carriers as well as all newborn babies. And if a pregnant woman is a carrier, the father is also tested.

    The trait certainly can manifest in some health problems, although it's still not well understood why some people have symptoms and others don't: hopefully there'll be more research soon.

    And finally, thanks for sharing that your family is Caucasian. That sickle cell only affects Black families is one of the huge myths that we are trying to combat, as it means so many people don't get tested!

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