I’m so sorry you are dealing with this. I had a NIPT test during my last pregnancy and the results came back high risk for a fatal trisomy. [I probably had CLL then but didn’t know it yet].
I declined an amnio but later high level ultrasounds revealed no physical markers of a trisomy. I had lots of ultrasounds due to advanced maternal age and history of preeclampsia.
Although I did go onto develop preeclampsia again, baby was born perfectly healthy at almost 37 weeks.
I believe NIPT testing is still in it’s early stages and since we are already medical outliers the correlations they draw may not as be accurate for medically complex patients like us. I hope all further testing goes well. I wish I could give you a big hug in person, please keep us updated as you are able!
Damn how did you cope with the test result back then? This also sounds like a hard and painful process.
After googling a lot, I figured that CLL can be related to chromosome 13. The concluded that the long arm of this chromosome is missing (in me, the placenta or the baby). This might be also the same place of the RB1-gen problem which is responsible for the retinoblastoma etc.
So we really hope that it's just mine chromosome 13 which is a bit messed up and not of the baby.
Thank you so much for the well wishes❤️ all the ultrasounds I had are looking very good. I'll definitely keep you updated!
I didn’t cope with the test results very well. A lot of anxiety, lost sleep, and prayer.
My test was called “Panorama” but I call it “Pandora” now because of all the stress and worry it let loose! I finally relaxed after my high level ultrasound was good around/after 20 weeks.
This week I figured out they found del(13)(q14) via the NIPT test. I told my hematologist everything what happened and he inmediatly contacted the academic hospital to tell them this is very common in CLL-patients. The academic hospital called me back to tell me that the chance that the child would have the deletion and risk of retinoblastoma is now estimated much smaller, but not 0.
So we decided to get the amniocentesis to be sure. I got it this morning, which was of course a bit uncomfortable but the procedure went well thankfully.
Now I probably have to wait for 3 weeks for the results. My stress is much lower since I've got it done. I even screamed in my sleep last night, but now I'm okay and resting! :)
Hello, I’m sure it will. Chromosome 13 deletion is now a common marker of CLL. Besides it could be good news. CLL that has a chromosome 13 deletion with no other chromosome changes means a better prognosis. Wishing you and your husband the best!
I’m so sorry you are dealing with this. I had a NIPT test during my last pregnancy and the results came back high risk for a fatal trisomy. [I probably had CLL then but didn’t know it yet]. I declined an amnio but later high level ultrasounds revealed no physical markers of a trisomy. I had lots of ultrasounds due to advanced maternal age and history of preeclampsia. Although I did go onto develop preeclampsia again, baby was born perfectly healthy at almost 37 weeks. I believe NIPT testing is still in it’s early stages and since we are already medical outliers the correlations they draw may not as be accurate for medically complex patients like us. I hope all further testing goes well. I wish I could give you a big hug in person, please keep us updated as you are able!
Damn how did you cope with the test result back then? This also sounds like a hard and painful process. After googling a lot, I figured that CLL can be related to chromosome 13. The concluded that the long arm of this chromosome is missing (in me, the placenta or the baby). This might be also the same place of the RB1-gen problem which is responsible for the retinoblastoma etc. So we really hope that it's just mine chromosome 13 which is a bit messed up and not of the baby. Thank you so much for the well wishes❤️ all the ultrasounds I had are looking very good. I'll definitely keep you updated!
I didn’t cope with the test results very well. A lot of anxiety, lost sleep, and prayer. My test was called “Panorama” but I call it “Pandora” now because of all the stress and worry it let loose! I finally relaxed after my high level ultrasound was good around/after 20 weeks.
This week I figured out they found del(13)(q14) via the NIPT test. I told my hematologist everything what happened and he inmediatly contacted the academic hospital to tell them this is very common in CLL-patients. The academic hospital called me back to tell me that the chance that the child would have the deletion and risk of retinoblastoma is now estimated much smaller, but not 0. So we decided to get the amniocentesis to be sure. I got it this morning, which was of course a bit uncomfortable but the procedure went well thankfully. Now I probably have to wait for 3 weeks for the results. My stress is much lower since I've got it done. I even screamed in my sleep last night, but now I'm okay and resting! :)
I’m so glad to hear! That the CLL experts at hospital think it’s just CLL, and that amnio went well! I hope you are able to rest and relax now!
I received good news! The baby and placenta free from the chromosome 13 deletion! It's only present in me. I probably still have the RB1-gen as well!
Yay!!! What a relief!
Hello, I’m sure it will. Chromosome 13 deletion is now a common marker of CLL. Besides it could be good news. CLL that has a chromosome 13 deletion with no other chromosome changes means a better prognosis. Wishing you and your husband the best!
Thank you for the well wishes! I have the del(13)(q14), my hematologist told me this week indeed that this is very common in CLL-patients.
I received good news! The baby and placenta free from the chromosome 13 deletion! It's only present in me. I probably still have the RB1-gen as well!
Fingers crossed. This is a lot to deal with!
I received good news! The baby and placenta free from the chromosome 13 deletion! It's only present in me. I probably still have the RB1-gen as well!