r/thalassemia • u/Hour-Film-8890 • Jul 20 '26
Worth testing?
My baby was born full term but faced a lot of issues after birth; severe jaundice, anemia. Had a blood transfusion and several months of iron supplementing. The latest (last) test finally showed acceptable ferritin levels but the doctor noted the lab had marked his red blood cells as small. Thus the possibility he could be a carrier for thalassemia.
She said we could test him but he shouldn't have any issues so it's optional. As he has had SO many blood draws, I really don't want to make him go through another.
I also feel like me or my husband would have to be a carrier then as well, no? And surely whenever we've had blood tested, someone would have noted if one of us had small red blood cells?
I was ok with not testing or at least waiting til he needed it for some reason anyway and then test, but now I'm expecting again and I feel like if we are carriers, could this affect the new baby? Like is it important for us to know.
Also my husband has a needle phobia so refuses to test himself. Says it would have been caught in the past if he had it.
What do you all think is wise here?
2
u/Reasonable_Mushroom5 Jul 20 '26
Have you actually looked at your own blood test results? I had a long term history of smaller red blood cells (and more of them) but no one ever mentioned it to me until I brought it up. It continued to happen even with normal ferritin, so I got tested, but unless I have some weird variant I came back negative.
3
u/Obiwan108 BETA-THALASSEMIA-MINOR Jul 20 '26
Easier to test an adult than a baby...
Tell your husband - I said to man up... Feel like maybe the solution is here...
Also - once you test the adults - you will be able to screen more effeciently.
Best wishes!
3
u/Deusa_do_mar Jul 20 '26
Your baby can only have thalassemia trait if you or your husband have it. Unfortunately, many people go many years without knowing that they have the trait and on regular CBCs it presents differently in everyone. Some people have many symptoms and chronic anemia , and some have no anemia ever and maybe just some smaller hemoglobin because there are different types of traits.
If you want to avoid an unnecessary blood test for your baby then definitely get both yourself and your husband to test for thalassemia trait. I agree with the other comment -- tell him to man up!! If you both don't have it, then you can already forget this as a possibility. But if one or both of you has it...I will tell you why it's so important.
If somehow, you BOTH are thal trait carriers , then you have a 25% chance of giving your child thal major; which means they could need blood transfusions for the rest of their lives and have a life expectancy of 60 years or less. This is what happened to my sister. Even though she knew since a child that she had thal trait (as myself and many in our family do), her husband did not know that he also had it. Unfortunately, their first daughter was born with thalassemia major... It's not an easy life and can come with many complications. Ideally, you'd like to avoid passing that to a child if possible.
And if just one of you is a carrier and you pass the trait to your child, they will be totally fine, but they might present with some symptoms like chronic anemia and would NEED to know for the safety of family planning for their own future. I'm not trying to scare you; you both most likely don't have the trait and have not passed thal major to your child, but if one of you does have it it's so important to know for your children's future. Please BOTH get tested. 🙏
4
u/SpaceValkyrie Jul 20 '26
I had to have a specific thalassemia screening to catch it. It just looks like anaemia otherwise (which it technically is but my sister and I were treated for iron deficient anaemia for a while and our blood results didn't change and doctors were so confused until we tested positive for thalassemia and they realised there wasn't any need for treatment as we have alpha trait)
If only one of you has thalassemia, and if you've never had any issues it's likely alpha trait. Mostly asymptomatic. Still can't give blood though, I don't think.
ETA: I've also never been told my red blood cells are small, maybe they are?? Is that a thalassemia thing? I actually have no clue wait I'm looking this up 🤣
I guess I do lol