Hi everyone, I have been a silent reader but decided to register so I could share my story. It is difficult to talk about thalassemia with people that don't have/know it.
When I was pregnant with my first child, I didn't know I had alpha thalassemia minor till the blood tests raised that issue. My parents had no clue about it. My husband knew he had alpha thalassemia minor from his mum. I was very lucky that my daughter was only a thalassemia minor just like us.
I fell pregnant again by accident when my daughter was 15 months old. This time I did a CVS to test to find out the thalassemia genotype. Unluckily this time, he was homozygous for alpha thalassemia and had Hb Bart's hydrops fetalis, which is incompatible with life. We were devestated and I proceeded with the termination with a heavy heart, knowing that it is against my religion.
It has been 3 months since then. We have decided to wait a while before deciding to have more kids. We do want more eventually (at least one more), but we are not sure if we should try naturally or via IVF (incidentally also against my religion).
Thanks for reading.