Husband has Sickle Cell gene and didn't tell me

[Anonymous]

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!

[Anonymous]

Anonymous wrote:Man, eugenics is frightening.

I'm thinking the same.

[Anonymous]

That’s actually a big deal to me. Move forward from this - say I feel like your omission was a form of deceit and a happy healthy child is in the best interest of both of us. I need you to communicate better as a spouse and now as a father. This can’t happen again.

[Anonymous]

Have you both been tested for low iq genes? IQ is highly heritable.

[Anonymous]

Do you think your husband should never have been born?

I don’t understand the concern, considering that it sounds like you don’t have the gene, the risk is that your child gets one copy of the gene which is recessive. It’s no different than your husband’s current state, which is that it has no impact on his health.

[Anonymous]

He probably didn’t think it was that big of a deal and he assumed you don’t have the trait. I have the trait and it has never affected my life, honestly I don’t think about it until I go to the doctor.

[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!

+1

I totally agree. This hits close to home for me right now. My niece suddenly died back in July due to a genetic heart condition that they were unaware she had. My sister and brother-in-law blame themselves for not doing more.

[Anonymous]

I'd be angry.

Yes - it's a low risk if you don't carry the gene, but unless he knew you don't carry the gene, he can't be sure your child would only have one copy of the gene.

There is a lot of nuance around pre-conception and pre-implantation genetic testing, and I don't ever plan on doing a full genetic test on myself or my child. However, if gene being tested isn't merely an increased risk, but something definitive (Tay-Sacs, Sickle Cell, Huntingtons) and there's a possibility of using such testing to avoid burdening a child with those horrible diseases, or even start treatment at birth, I think it's unconscionable to not do the testing.

Post-conception/implantation - it's even grayer.

If I was OP, I'd do testing to make sure I'm not a carrier.

Beyond that, I don't know what I'd do.

[Anonymous]

Anonymous wrote:I'd be angry.

Yes - it's a low risk if you don't carry the gene, but unless he knew you don't carry the gene, he can't be sure your child would only have one copy of the gene.

If OP cares so much about this, she should have had a full genetic screening before losing her virginity.

[Anonymous]

ImOO, ask yourself if this in would have stopped you from conceiving with your husband. My guess is ...no. so now you know. We can't live our lives like this. My sister has the BRCA gene I do not. I have the hemochromatosis gene. All we can do is move forward and test our children if we wouldn't consider IVF and genetic screening of embryos.

Which you really don't need to, or you would have heard since you're so worried.

[Anonymous]

^ eff it. I REALLY can't type on my phone.

[Anonymous]

I guess my main questions would be how much does he think about this kind of thing, and how much it matters to you — since the chances of it impacting your baby seem quite small. I can imagine many people not thinking very much —or at all— about something found during their own newborn assessments that has never caused them any issues. I can also imagine wanting to avoid upsetting a potentially anxious pregnant spouse. At this point, the best course might be for both of you to consult with your medical team — something that’s likely to significantly allay your concerns about the medical implications of parenting a child while having the trait.

[Anonymous]

You’re not wrong to be concerned. It’s rare, but there are folks with sickle cell trait (rather than sickle cell disease) who do experience symptoms.

“Established co-morbidities associated with sickle cell trait include exertional rhabdomyolysis, pulmonary emboli, splenic infarction with high altitude, and renal diseaseii and renal medullary cancer of the kidney.ii“

“Scientific literature has historically suggested that SCT is a benign condition, but it is increasingly clear that this is not the case. SCT has been linked to hematuria, chronic kidney disease, sudden death due to exertion, glaucoma, rhabdomyolysis, splenic infarction and other clinical phenomena. A study of American football players found that patients with SCT had a 37-fold higher risk of exertional death than their counterparts without the trait. Another study found that there is a 54% higher chance of developing rhabdomyolysis during physical exertion in the presence of SCT. In recognition of our increased knowledge in this therapy area, screening policies such as that of the National Collegiate Athletic Association in the US are being used to identify people at risk of exertional death because of SCT.”

“Sickle cell trait is exclusively associated with rare but often fatal renal medullary cancer. Current cumulative evidence is convincing for associations with hematuria, renal papillary necrosis, hyposthenuria, splenic infarction, exertional rhabdomyolysis, and exercise-related sudden death. Sickle cell trait is probably associated with complicated hyphema, venous thromboembolic events, fetal loss, neonatal deaths, and preeclampsia, and possibly associated with acute chest syndrome, asymptomatic bacteriuria, and anemia in pregnancy.”

[Anonymous]

Anonymous wrote:You’re not wrong to be concerned. It’s rare, but there are folks with sickle cell trait (rather than sickle cell disease) who do experience symptoms.

“Established co-morbidities associated with sickle cell trait include exertional rhabdomyolysis, pulmonary emboli, splenic infarction with high altitude, and renal diseaseii and renal medullary cancer of the kidney.ii“

“Scientific literature has historically suggested that SCT is a benign condition, but it is increasingly clear that this is not the case. SCT has been linked to hematuria, chronic kidney disease, sudden death due to exertion, glaucoma, rhabdomyolysis, splenic infarction and other clinical phenomena. A study of American football players found that patients with SCT had a 37-fold higher risk of exertional death than their counterparts without the trait. Another study found that there is a 54% higher chance of developing rhabdomyolysis during physical exertion in the presence of SCT. In recognition of our increased knowledge in this therapy area, screening policies such as that of the National Collegiate Athletic Association in the US are being used to identify people at risk of exertional death because of SCT.”

“Sickle cell trait is exclusively associated with rare but often fatal renal medullary cancer. Current cumulative evidence is convincing for associations with hematuria, renal papillary necrosis, hyposthenuria, splenic infarction, exertional rhabdomyolysis, and exercise-related sudden death. Sickle cell trait is probably associated with complicated hyphema, venous thromboembolic events, fetal loss, neonatal deaths, and preeclampsia, and possibly associated with acute chest syndrome, asymptomatic bacteriuria, and anemia in pregnancy.”

I understand your intent in wanting to provide knowledge but I don’t think this is going to help lessen her anxiety surrounding this. 😅

[Anonymous]

Did you do genetic testing before trying to conceive? I did and am carrier for multiple things which I can't even recall but had my husband test to see if he also was and he wasn't so it doesn't matter. If you cared about carrier genetics why wouldn't you both test