14 weeks pregnant, both me and DH have sickle cell trait

[dreamerkr]

Hey guys. Just as the title says tbh. I’m currently almost 14 weeks pregnant and I just found out that both me and DH have sickle cell trait. I have a history of recurrent miscarriage and we’ve been trying for the longest time, but today after finding out that DH is a carrier of sickle cell trait too I’m upset. There’s been so many difficulties already in this pregnancy, I can’t even describe how I’m feeling. The nurse told me the baby will have a 1/4 chance of sickle cell disease(?) and there’s a higher chance that they won’t have it but that’s still a high chance. I feel so sick right now and I don’t know how to feel. All I know though is that I’m not gonna be getting anymore testing done before baby is born. The baby is very very much wanted and loved already and of course we still want him/her no matter what. Does anyone have any experience of this? Or do you guys know more about this because I don’t know that much. Any advice? Please be completely honest guys.

[DPotter]

This must be so difficult for you and your parent dreamerkr

I totally understand your wish not to have any further tests, however I do think it would be a good idea if you could have a consultation with a genetic specialist if you haven't already. That way you can have a plan in place for when your baby is born, so that he or she can have the right medical and genetic assessments and necessary treatment as soon as possible.

[dreamerkr]

It’s so difficult, I didn’t know at all this would happen. I just feel so sick and have no idea what to think. I will definitely do that thank you so much

[dreamerkr]

Bump?

[myotherusernameisonholiday]

Hi OP, I don't have experience of sickle cell but I had both my children knowing they had a 50:50 chance of inheriting DH rare condition which could have been life limiting. Once both were born they were referred into the genetics team, we had genetics counselling session and ultimately had them genetically screened for DH condition. The genetics team were really, really kind, knowledgeable and helpful. I had a crisis of whether I should be having children with this chance but ultimately because DH was in ok health we thought it was worth the risk. I would if you could, speak to a genetics counsellor, ours was so lovely x

[dreamerkr]

Thank you so much. I hope your children are okay? X

[myotherusernameisonholiday]

@dreamerkr

Thank you so much. I hope your children are okay? X

Thank you so much, yes we were incredibly lucky and neither child has inherited his condition. I really hope you have the same, and wish you all the luck. We were under the Oxford genetics team, if you are anywhere near there (they cover quite a large area) and they were wonderful x

[choochoomama]

Hello @dreamerkr I will be honest!
I was in the same position as you 11years ago. My daughter now aged 10 has sickle cell disease (i cried for days when we found out). My son aged 7 doesn't have sickle cell or the trait. We didn't test him until birth (i cried with relief). My daughter who is 5 has the trait and we tested while pregnant. No complications with the testing. I feel your pain and I understand. My 10 year old is funny, smart, beautiful and strong. She does very well in school and is popular with teachers and classmates. Takes part in swimming, netball etc just like her peers. She does have lots of challenges with her health and this does have an impact on our whole family. But I want you to know that every child has it a bit different. There is a lot of support out there, especially when they are young. I wish i had spoken to more people about it at your stage, just so that I could prepare myself a bit more. It was a lot to take in and still is. Her consultants are very helpful and she has regular appointments/scans and been on daily medication since she was a baby. I'm here talk whenever you need.

[dreamerkr]

Thank you so much for your reply. I hope your daughter is doing okay? I don’t want to get tested while pregnant because I’m okay with finding out after having baby, it was so difficult when I found out that my husband has the trait too because what are the chances?! I know there’s a 25% chance that the baby will have sickle cell disease and that’s a pretty high chance, but we’ll get through it hopefully. Can you please tell me a bit more about what it’s been like for your daughter? I really hope she’s doing well as well as you guys as a family! X

[dreamerkr]

@dreamerkr

Thank you so much for your reply. I hope your daughter is doing okay? I don’t want to get tested while pregnant because I’m okay with finding out after having baby, it was so difficult when I found out that my husband has the trait too because what are the chances?! I know there’s a 25% chance that the baby will have sickle cell disease and that’s a pretty high chance, but we’ll get through it hopefully. Can you please tell me a bit more about what it’s been like for your daughter? I really hope she’s doing well as well as you guys as a family! X

@choochoomama

[choochoomama]

She does have triggers which can set off a crisis , e.g cold weather. She had her first crisis at 3years old and spent a few days in hospital. We are honest with her and tell her what's going on in a way she can understand. She knows her body best and is able to tell us how she's feeling now thag she's older. There are different versions of sickle cell some more severe than others. She is doing very well now. There should be plenty of support from your consultants if you need it. So much can be done to make things less stressful for you and your family. I hope everything turns out well for you whatever the outcome.

[Singapore4]

@dreamerkr how did you ever get on OP?

Ds had the trait and it came as a shock I cried and was so distressed. He is 8 now and has no symptoms.

[dreamerkr]

@Singapore4

@dreamerkr how did you ever get on OP?

Ds had the trait and it came as a shock I cried and was so distressed. He is 8 now and has no symptoms.

DS too has the trait but thankfully not sickle cell disease. I have sickle cell trait and have never had any symptoms :)

[NaturalBae]

My parents found out that I had Sickle Cell Trait when I was 5 years old due to being tested as a result of a cut that was taking a long time to heal. It eventually healed and I’ve been fine since.

My Mum and several other family members have since found out they also have the trait. My Cousin’s child has Sickle Cell Disease and has managed fairly well into their early teens without too many hospital admissions. Their parents put a lot of focus on healthy nutrition.

I found out that my eldest adult DC also has the trait as they had the now standard heel prick test the day after her birth at the hospital. Years later we then found out that DH had the trait when his bloods were taken prior to an operation due to a sports injury. We then lost a pregnancy before finding out that the baby had Sickle Cell Disease, but we have no idea if that was linked to losing the pregnancy. Our last two DC also have the trait and were tested for it when I was pregnant with them. Pregnancies went well. All five of us in our household have the Sickle Cell Trait without any issues. All of us are involved in exercise and sports.

We found the Specialist hospital staff and geneticists really helpful and informative when I was pregnant with our last two DC, as they provided support and signposted us to relevant organisations for further information and additional support.

All the best.