Husband has Sickle Cell gene and didn't tell me

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I am a carrier of the trait, as was my mom. My mom told me I was negative so I was totally surprised when I came up positive during my pregnancy labs. This is not a big deal and not worth you getting an amniocentesis over. Your child has a 50 percent chance of being a carrier. One of my kids is, the other isn't. We need to stay well hydrated and listen to our bodies, that is all. Please calm down. And not only black people can have it. This is misinformation.

Not everyone that has sickle cell trait is black, but everyone that has sickle cell trait has a black ancestor. They traced the origin of the gene back to one child that lived in Africa 7,300 years ago.

https://www.bbc.com/news/world-africa-43373247

https://www.the-independent.com/life-style/health-and-families/health-news/hidden-black-ancestry-linked-to-rise-in-sickle-cell-blood-disorder-738008.html

This is true. This is how there are people that physically appear to be fully European that have sickle cell trait or disease. The African ancestry decreases with each generation, but the sickle cell allele can keep getting passed down. The ancestry won't always show up on an ancestry DNA test either because those tests only go back 6-8 generations. I was taught that we are to screen every patient regardless of what they self-report their background as or what they physically appear to be for this exact reason. Not every medical professional is aware of this or follows this protocol though.

I think I experienced something similar. I have two genes that are associated with Asian ancestry (one copy of a mutation in the EDAR gene that contributes to thicker straighter hair and more sweat glands + type B blood). The mutation in the EDAR gene is exclusive to people with at least one Asian ancestor as it is thought to have originated in China. When I did 23andMe, no Asian ancestry showed up. I now think that part of my ancestry was too long ago to show up, but the allele must have kept getting passed down which is how I have it without being Asian. Each of my children have a 50% chance of inheriting this allele from me.

https://www.ucl.ac.uk/news/2013/feb/animal-model-evolution-indicates-thick-hair-mutation-emerged-30000-years-ago

[Anonymous]

Anonymous wrote:So you don’t want children with your husband?
Please, get an abortion and divorce him. He deserves a wife that’s wants his children.

She deserves a husband that does not withhold inheritable genetic information from her- how would he feel if the new wife he picks out does this to him?

[Anonymous]

Anonymous wrote:OP, did you find out your dh was part African at the same time. I think the race element may be part of why she is so angry. Anything can happen to your kid. It's the hardest part of being a parent. You can't control for everything. Yes, he should have told you, but not sure your reaction is warranted.

This is an insane take. You can be concerned about genes your children will inherit because they code for diseases without being a racist.

[Anonymous]

Anonymous wrote:Man, eugenics is frightening.

she says on the way to her amniocentesis

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, did you find out your dh was part African at the same time. I think the race element may be part of why she is so angry. Anything can happen to your kid. It's the hardest part of being a parent. You can't control for everything. Yes, he should have told you, but not sure your reaction is warranted.

This is an insane take. You can be concerned about genes your children will inherit because they code for diseases without being a racist.

Exactly, I would be p*ssed if my spouse knew they were a carrier for any genetic disorder and decided it wasn't important to let me know before we had kids. Who gives a f%!$ what race the gene is associated with?! That is irrelevant here.

[Anonymous]

OP, did you do pre-conception genetic testing? If not, you have no leg to stand on here.

[Anonymous]

The onus is on the person who is aware of their carrier status to bring it up when entering into a serious relationship. Most people who are aware of their carrier status are told this by their parents from a young age.

How do I know this? I'm a carrier of Tay-Sachs. My mom practically pounded it into my head.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Man, eugenics is frightening.

she says on the way to her amniocentesis

Odd response. How is that relevant?

[Anonymous]

Potential parents not discussing these things or choosing to ignore the potential risk is how we end up with all of these cases of debilitating (and often fatal) genetic diseases.

[Anonymous]

Anonymous wrote:The onus is on the person who is aware of their carrier status to bring it up when entering into a serious relationship. Most people who are aware of their carrier status are told this by their parents from a young age.

How do I know this? I'm a carrier of Tay-Sachs. My mom practically pounded it into my head.

+1

It is SO important to disclose your carrier status when you are someone that knows. Simply having the knowledge that you are a carrier is a blessing/privilege in and of itself. Not everyone is that lucky. So many people walk around completely oblivious to the fact that they are. As a general rule, be a responsible, moral human being and put your knowledge to good use.

[Anonymous]

Anonymous wrote:Potential parents not discussing these things or choosing to ignore the potential risk is how we end up with all of these cases of debilitating (and often fatal) genetic diseases.

Yup, I would bet most folks with sickle cell disease have parents who either did not know they were both carriers or knew they were both carriers but chose to take the risk by having children together anyway.

[Anonymous]

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

[Anonymous]

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???

[Anonymous]

Anonymous wrote:

Anonymous wrote:Man, eugenics is frightening.

Eugenics based on superficial, shallow things like physical appearance (hair color, skin color, eye color, etc.) is frightening. People wanting their kids to be healthy so that they do not have to endure pain/a shortened lifespan is not frightening. There is a reason why the medical community advocates for genetic testing for medical conditions before and during pregnancy!

Ableist.

[Anonymous]

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?