Anonymous wrote:Did he intentionally withhold it or did it just not come up, he didn't think about it until something made him think of it in the context of a conversation. Did he assume you knew as he has siblings / parents / family with sickle cell disease?

How does he know he is a carrier of the gene?
Is there sickle cell disease in his family? Did you ever discuss it?

OP here - His parents found out after routine newborn screening in the hospital after he was born. I'm not aware of any Sickle Cell disease in his family.

Anonymous wrote:Is he Black? It is common knowledge that Black people must be screened for sickle cell due to it being more common in that demographic. Other racial/ethnic groups have other conditions that must be screened for. When I was pregnant, I had to fill out a form at the OBGYN that asked about both of our ethnic backgrounds so that they would know what they needed to test for.

WTF. Most Black people are not screened for sickle cell.

How pregnant are you? Do you want amniocentesis and potentially a termination? I would get myself screened because people of other ethnicities and from certain areas also can carry the trait.

I am so sorry. He sounds like a real shit.

If he is black, this would have been discussed at some point with your health care team.

If he isn't black, but is from a middle east, mediterranean, south asian background, then he likely had family with the disease to have been tested himself.

Lots of people have that gene. I would only be mildly upset about this. It's forgivable.

I'd choose to have my own kids knowing this. Strangers' DNA can also be problematic.

Would you rather that your kid have ten half-siblings they can find as grownups through Ancestry.com?

Forgive and move on.

Anonymous wrote:

Anonymous wrote:Did he say why he didn't tell you?

OP here - All he has said is that he didn't want to worry me.

If he's black and you're not (the impression I'm getting from your post is that you are not black), he probably didn't see the need to tell you. It's a known issue in the black community but needs two carriers to pass on. Finding a single kid in all of medical history who died is not a refutation of that, but I understand that pregnancy is a time of heightened emotions.

Talk to the genetic counselor at your OB's office and you will probably calm down quite a bit.

You sound psycho.

How does he know? Why would he have been tested as a child?

Did you get tested?

Anonymous wrote:Did he say why he didn't tell you?

OP here - All he has said is that he didn't want to worry me.

Is he Black? It is common knowledge that Black people must be screened for sickle cell due to it being more common in that demographic. Other racial/ethnic groups have other conditions that must be screened for. When I was pregnant, I had to fill out a form at the OBGYN that asked about both of our ethnic backgrounds so that they would know what they needed to test for.

Anonymous wrote:Not sure what to make of this. It's standard to offer genetic testing for recessive genes as part of preconception counseling. My thought is that, if this were something you were really concerned about, you would have gotten the genetic testing. It's concerning that your husband didn't tell you beforehand. But many people are carriers for genes without knowing it, and so if it were really a problem for you, I would have thought you would have opted for the screening.

Isn't it also the case that sickle cell gene confers some benefits, like resistance to malaria?

A lot of people decline genetic testing because of the invasiveness. To test for sickle cell, they would need to perform amniocentesis.

Did he intentionally withhold it or did it just not come up, he didn't think about it until something made him think of it in the context of a conversation. Did he assume you knew as he has siblings / parents / family with sickle cell disease?

How does he know he is a carrier of the gene?
Is there sickle cell disease in his family? Did you ever discuss it?

Not sure what to make of this. It's standard to offer genetic testing for recessive genes as part of preconception counseling. My thought is that, if this were something you were really concerned about, you would have gotten the genetic testing. It's concerning that your husband didn't tell you beforehand. But many people are carriers for genes without knowing it, and so if it were really a problem for you, I would have thought you would have opted for the screening.

Isn't it also the case that sickle cell gene confers some benefits, like resistance to malaria?

Did he say why he didn't tell you?

DH decided to wait to tell me that he is a carrier of the Sickle Cell gene until AFTER we found out that I'm pregnant (when he has apparently been aware of this since childhood). I am devastated and have been floored since he told me. There is a possibility that the gene could be passed onto our child. Our child won't have full-blown Sickle Cell as both parents have to carry the gene for that to happen, but the point is that I do not want my child to inherit an abnormal gene. I have been doing research and found a case of a child that passed away from complications due to simply having 1 Sickle Cell gene. (https://www.ktnv.com/13-investigates/she-lost-her-baby-then-her-freedom-las-vegas-mother-wrongfully-accused-in-shaken-baby-syndrome-case)

In addition, I'm angry that he withheld this information from me when we were trying to conceive. I feel duped. I'm not sure where to go from here.