Husband has Sickle Cell gene and didn't tell me

[Anonymous]

What a diabolical piece of shit

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

"As part of its Sickle Cell Initiative, the American Red Cross currently tests all donations for the sickle cell trait from self-identified African Americans. Last month, the screening was expanded to include those who identify as multiracial. The screening involves a simple blood test.

It is estimated that about 1 in 13 Black or African American babies in the United States is born with the sickle cell trait, according to the Centers for Disease Control and Prevention. However, many individuals are unaware if they carry the trait as testing at birth was not widely provided until 2006."

https://www.redcross.org/local/michigan/about-us/news-and-events/press-releases/raising-awareness-about-sickle-cell-disease--testing-and-need-fo.html?srsltid=AfmBOorvybEZJD1K__ScNeQ09e7CqJg8oS6BKDsf2WU_hqsWeXan3r6L

"If an individual does not want their donation to be screened for sickle cell trait, they should select the “I prefer not to answer or other” response regarding their race and ethnicity. Only donations from self-identified multiracial and Black or African American donors will be screened for sickle cell trait."

https://www.redcrossblood.org/faq.html

BS policies like this are why I always check the Pacific Islander box as a fully Black woman. As soon as they see that Black/African box checked, they start treating you differently than they would an individual of another race. Apparently you can't even donate blood in peace as a Black person. How is the Red Cross only screening the blood of Black (and part Black) donors for a genetic blood disorder (sickle cell) not considered discrimination???

Good for you! I find this bizarre. Are they testing Jewish donors for Tay-Sachs? Middle Eastern people for Familial Mediterranean Fever, etc?

Um, no, because being a Tay-Sachs carrier doesn't potentially affect the blood product itself. Duh? And there's this: https://www.lifesouth.org/become-a-sickle-cell-hero/

They screen because they want to HELP people. Someone with sickle cell trait could be matched to a recipient with sickle cell anemia and make them less likely to react to the transfusion.

The assumptions here of nefarious intent are beyond ridiculous and uninformed.

[Anonymous]

Red Cross screens ALL blood for a lot of stuff including Sickle Cell Trait. Some people can't safely receive that blood, most can. Look it up.

[Anonymous]

Anonymous wrote: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.

But why do all this? Unless op is also a carrier, the baby could be a carrier. So it makes sense to check op rather than the baby. If the baby ends up a carrier, then would be better to get tested before getting married and having kids.

This is the sort of information that should have been brought up before getting married and definitely before conceiving, just to make sure that OP herself is not a carrier.

[Anonymous]

Anonymous wrote:

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.

All they need to do is test OP. Sickle cell disease needs to be inherited from BOTH parents.

[Anonymous]

Anonymous wrote:Shocked by these responses.
This is a serious big deal. Just like it would be to hide infertility. This might not be a big deal for some but is for OP so one should be dismissing her concerns.

No, it’s not even close to hiding infertility. It should have been mentioned to make sure that the partner is not a carrier as well, but being a carrier doesn’t affect quality of life. SCD develops when inherited from both parents.

[Anonymous]

Anonymous wrote: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.

I understand you're concerned, but rest assured your child WILL inherit abnormal genes whether you're aware of them or not.

[Anonymous]

Point is her "D"H either didn't know you can be of any ethnicity and carry the trait or didn't care if his child had sickle cell (a possibility if OP carries the trait).
That's awful.

[Anonymous]

Anonymous wrote:You sound psycho.

+1

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

"As part of its Sickle Cell Initiative, the American Red Cross currently tests all donations for the sickle cell trait from self-identified African Americans. Last month, the screening was expanded to include those who identify as multiracial. The screening involves a simple blood test.

It is estimated that about 1 in 13 Black or African American babies in the United States is born with the sickle cell trait, according to the Centers for Disease Control and Prevention. However, many individuals are unaware if they carry the trait as testing at birth was not widely provided until 2006."

https://www.redcross.org/local/michigan/about-us/news-and-events/press-releases/raising-awareness-about-sickle-cell-disease--testing-and-need-fo.html?srsltid=AfmBOorvybEZJD1K__ScNeQ09e7CqJg8oS6BKDsf2WU_hqsWeXan3r6L

"If an individual does not want their donation to be screened for sickle cell trait, they should select the “I prefer not to answer or other” response regarding their race and ethnicity. Only donations from self-identified multiracial and Black or African American donors will be screened for sickle cell trait."

https://www.redcrossblood.org/faq.html

BS policies like this are why I always check the Pacific Islander box as a fully Black woman. As soon as they see that Black/African box checked, they start treating you differently than they would an individual of another race. Apparently you can't even donate blood in peace as a Black person. How is the Red Cross only screening the blood of Black (and part Black) donors for a genetic blood disorder (sickle cell) not considered discrimination???

Good for you! I find this bizarre. Are they testing Jewish donors for Tay-Sachs? Middle Eastern people for Familial Mediterranean Fever, etc?

Um, no, because being a Tay-Sachs carrier doesn't potentially affect the blood product itself. Duh? And there's this: https://www.lifesouth.org/become-a-sickle-cell-hero/

They screen because they want to HELP people. Someone with sickle cell trait could be matched to a recipient with sickle cell anemia and make them less likely to react to the transfusion.

The assumptions here of nefarious intent are beyond ridiculous and uninformed.

The point was why are they ONLY screening donations from black and part black donors for sickle cell. It clearly states on the Red Cross website that they do not screen blood donations from individuals that are members of any other racial group for sickle cell.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Shocked by these responses.
This is a serious big deal. Just like it would be to hide infertility. This might not be a big deal for some but is for OP so one should be dismissing her concerns.

No, it’s not even close to hiding infertility. It should have been mentioned to make sure that the partner is not a carrier as well, but being a carrier doesn’t affect quality of life. SCD develops when inherited from both parents.

According to a previous poster, this is incorrect. See quote below.

"It's a widespread myth that sickle cell trait is always asymptomatic. Sickle cell trait is an intermediate phenotype, not a true asymptomatic carrier state. A proportion of individuals with SCT WILL have pain crises and other symptoms. Think of the trait as a less severe version of the disease. OP, I can't decide for you if you're in the right to be angry. I can only provide you with scientific facts."

[Anonymous]

Anonymous wrote:

Anonymous wrote:I get it. DH has a blood disorder which he said won’t impact my kids since I wasn’t a carrier. Now the kid needs minor surgery and has to see a hemonc to make sure everything is ok. I was also angry.

It feels unethical to intentionally not tell a partner or downplay the severity of said disorder (which seemed to be what happened in your case). I don't care about all of this eugenics talk. Everyone should be able to decide for themselves if they want to accept the risk. That was taken away from op (and you to some extent).

If this PP cared enough, she should have consulted a professional when she learned this information. She did not.

[Anonymous]

Anonymous wrote:I know a wonderful young man with SCT that was forced to stop running track after exertional sickling caused him to collapse, so I'm going to have to disagree with the previous posters stating that it is "no big deal". Op's spouse not suffering from adverse effects does not mean their kid won't if (s)he ends up with the gene. Everyone is different.

anything can happen to us. That’s the cost of living someone.

[Anonymous]

Anonymous wrote:Red Cross screens ALL blood for a lot of stuff including Sickle Cell Trait. Some people can't safely receive that blood, most can. Look it up.

Well, they don't screen ALL blood for sickle cell. They make it clear that they only screen blood from black and part black donors for sickle cell.

"As part of its Sickle Cell Initiative, the American Red Cross currently tests all donations for the sickle cell trait from self-identified African Americans. Last month, the screening was expanded to include those who identify as multiracial." - https://www.redcross.org/local/michigan/about-us/news-and-events/press-releases/raising-awareness-about-sickle-cell-disease--testing-and-need-fo.html?srsltid=AfmBOorvybEZJD1K__ScNeQ09e7CqJg8oS6BKDsf2WU_hqsWeXan3r6L

"If an individual does not want their donation to be screened for sickle cell trait, they should select the “I prefer not to answer or other” response regarding their race and ethnicity. Only donations from self-identified multiracial and Black or African American donors will be screened for sickle cell trait." - https://www.redcrossblood.org/faq.html

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:So he is a carrier with no complications and you are a eugenicist. Got it

Eugenics is an attempt to "improve" the population as a whole often through forced sterilization and other unethical means. An individual willingly choosing not to have children with a certain person for any given reason is not eugenics. Even if it was, an individual's choice would not be anyone else's business.

We all have free will and should have full control over our own reproductive systems. It is dangerous to demonize that and attempt to guilt trip people.

+1

If you want full control over your reproductive systems, then you both need to get tested. No way around. OP is pissed because she knows she should have done that and she didn’t.