Alpha Thalassemia & Beta Thalassemia planning to have kids

Hi everyone, I am new to this website and I am actually glad to have found this as I am interested in learning more about thalassemia.  I apologize in advance if I am posting a topic that has been brought up already.   I'm still trying to read more on the posts.  

I grew up knowing that I have thalassemia minor, and was told for the longest time by my mom that I shouldn't marry someone with thalassemia because if we were to have kids, there may be issues.  Well, it's not really typical to have a conversation with a potential mate and ask, "Do you have thalassemia?"  I figured, what are the odds of that happening?  Well, turns out I married someone who was also told all their lives not to marry someone with thalassemia as well.  We are both are Filipino, but born and raised in the United States.  

The topic of us having thalassemia and having children in the future actually came up during the time we were dating for several years and well, it wasn't a deal breaker for us.  We figured, if we decided to get married, it will be all in God's plan on what happens if we were to have children or not.  

After 3 years of marriage and constant pressure from our parents, relatives, and even co-workers on us having kids, and also me not getting any younger (I am 30 years old), my husband and I started talking about starting a family.  My husband and I talked about it a lot, and we were leaning on trying to have our first child around next year.  But, because I know we both have thalassemia minor, it made me want to look more into knowing what are the chances of us having a child with thalassemia major or issues related to thalassemia?  

We got blood tests done and it was determined in the letter that came with the results that I have alpha thalassemia trait and my husband has beta thalassemia trait.  Attached to this post is a picture of the results of the blood work done which neither one of us really know how to interpret other than what was written.  We've both lived healthy lives and never needed to take any supplements or what not.  We do plan on talking to a genetic counselor on the results, but I just wanted to get information as well from this website if any of you know what may occur if a couple with one person having alpha thalassemia trait and the other with beta thalassemia trait were to have children?  Or if any of you are on the same boat as me and my husband but have had children already?  I'm just curious to find out and learn more.  

Looking forward to reading some responses and experiences.  Thanks once again for this very informative website on thalassemia.

- L

Hi L,

When one carries alpha thal and the other carries beta thal, it more or less cancels each other out. Less of each globin is produced, so there isn't an imbalance of alpha and beta globin, and the result is that children will have symptoms of thal minor at the most.

However, I would suggest that your husband have a DNA analysis to confirm that he is not also a silent alpha carrier, as this would not be observed in his hemoglobin electrophoresis test. His HbF is low, and this could just be that he doesn't produce much, but it could also be the result of him being a silent alpha carrier. To be safe, I would suggest DNA testing for him before deciding to have children. If no alpha deletion is fine, you shouldn't have any worries.

You should be taking a folic acid supplement, as it is prescribed for all women of childbearing years, as it is the most important thing a woman can do to prevent birth defects.

Thank you Andy for the helpful information and advice, I really do appreciate it.  I sure hope that after talking to a genetic counselor and my husband getting a DNA analysis done, we are able to learn more and decide whether we should go forward or not to have children.  I'll keep you posted on this journey we have ahead of us. 

- L

If your husband is not a silent alpha carrier, your kids will be thal minors at the most.

So the latest update now is that my husband and I are expecting our first child.  It is definitely an exciting time.  We talked to a genetic counselor and Andy you were right - she did say our child would have thalassemia minor at the most. 

I recently did a Family Prep Screen with Counsyl, which looks at over 100 inherited health conditions that could be passed onto the child.  I got the results yesterday and was a bit nervous because I learned that I have the HbE trait (Hb E heterozygote).  I don't know now how that pans out for our child since I have alpha thalassemia trait and my husband having beta thalassemia trait.  I'm supposed to have a consultation with a genetic counselor on Friday, but that is in two days and I just wanted to see if anyone has any experience with this type of combination in your relationship while trying to have a child?  And what are the chances of having a child with thalassemia major?  Thanks...

- L

L,

The presence of HbE does complicate matters. Much depends on the severity of the beta thal mutation of your husband. If it is a beta zero mutation, it increases the chances of a child being transfusion dependent, should the child inherit the beta gene from your husband and the HbE gene from you. However, the presence of alpha can moderate the severity of the condition, if the child inherited the alpha deletion as well. If your husband has a beta+ mutation, and the child was to inherit that and the HbE, then the condition would be less severe and more unlikely to require transfusions.

And as always when each parent carries one thal gene (including HbE) the odds of having a child with HbE beta thalassemia are 25%

Hello Andy,

Good morning.How are you?

Whats the difference between thal gene and HbE? If someone have HbE why he/she called carrier? Is it also a thal gene? I have not clear concept...

If both are thal gene carrier then the baby might be thal major but why major or transfusion independent when one parents have beta/alpha trait and another have Hb E ?
 

And as always when each parent carries one thal gene (including HbE) the odds of having a child with HbE beta thalassemia are 25%

Lokkhi,

Beta thalassemia and HbE both affect the beta globin gene (as does sickle cell anemia). HbE by itself does not cause problems for most carriers. There are other similar defects of the beat globin gene, like Hb Lepore, which was carried by Lisa, the founder of this site, that are also not a problem by themselves, but when matched with a thalassemia mutation of the beta globin gene on the other chromosome, present as a more severe condition, that can be anywhere from intermedia to major. In patients with these combinations of beta genes, there is little to no normal adult Hb.

Thanks Andy for help me to understand...

Feeling so sad and want to know why all of our child's are suffering? why?...

Thanks Andy for your helpful information. I did come across similar information as I did research online and just wanted to make sure I got my facts straight.  I will have my phone consultation tomorrow with the genetic counselor to get further clarification and ask questions.  I sure hope that everything goes well for my baby.