Husband has Sickle Cell gene and didn't tell me

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

This isn't a routine newborn screening...so maybe he doesn't understand?

It actually is now, but that's relatively recent. Its only since 2006 that all states require it. But some states have screened since the 70s.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

This isn't a routine newborn screening...so maybe he doesn't understand?

It is in all 50 states. They screen for over 50 genetic disorders when they prick the baby's heel. Sickle cell is one of those.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

This isn't a routine newborn screening...so maybe he doesn't understand?

Every baby born in the US is screened for it at birth unless the parents decline the screening entirely. Many parents don't notice or remember it being done because they're not notified of the results unless there is an abnormality detected.

[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.

This means there will be more white/Asian people walking around with sickle cell in the future, right?

[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.

LOL agreed. I’m married to a man of color and have never been tested, nor was it brought up

[Anonymous]

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:

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.

LOL agreed. I’m married to a man of color and have never been tested, nor was it brought up

It depends on what you mean by man of color. It is more common in people of African (especially West African) and South Asian ancestry but not common in people of East Asian ancestry.

[Anonymous]

^ West and Central African*

[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.

LOL agreed. I’m married to a man of color and have never been tested, nor was it brought up

It depends on what you mean by man of color. It is more common in people of African (especially West African) and South Asian ancestry but not common in people of East Asian ancestry.

It is prevalent in areas of Central, Southern, and East Africa as well. Not only West Africa.

[Anonymous]

Anonymous wrote:

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.

I’m Black. My XH wasn’t. We were so blithe about my sickle cell trait until we met with the ob. Turns out that it can combine with thalassemia carried by Mediterranean peoples into a worse blood disorder than either SC or Thalassemia alone. We got lucky, but it was a lesson learned about the conditions we were each carriers for.

[Anonymous]

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.

Ditto. My OB provided me with a questionnaire that asked if either of us are of Ashkenazi Jewish, European, or African ancestry. It specifically mentioned screening for Tay-Sachs, Cystic Fibrosis, and Sickle Cell.

[Anonymous]

It's important for children to know they carry the trait.
Then they know to have partners test too. My next door neighbors had an apparently healthy son but his younger sister failed to thrive. Turns out she had CF. So did her brother. It's a recessive gene but both parents were carriers. Unbeknownst to them.

[Anonymous]

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

[Anonymous]

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

I've seen what the second link talks about play out in real life. A good friend of mine (who was adopted at birth) found out that she's approx. 25% African due to this. She tested positive for the trait (which sparked curiosity about her family history). She ended up finding out that her biological mom is half Black.