Stories from women who chose to ask before marrying — and the men who supported them.
“My uncle's son has sickle cell. I couldn't get married without asking first.”
The premarital screening at the hospital had cleared us years ago, but I wanted the full picture. NAWA's test showed we were both silent carriers of the same HBB variant — a 1-in-4 risk each pregnancy. Our counselor didn't push us anywhere. We married, and today we plan our pregnancies with a hematologist who knows us by name. Knowing gave us calm, not fear.
“We're both thalassemia carriers. We're also parents to a healthy baby now.”
When both reports said 'carrier', I cried in the counseling session. Then the doctor calmly walked us through the options — natural conception with prenatal diagnosis, or IVF with PGT-M. We chose IVF+PGT-M so we could screen embryos before implantation. It wasn't easy, but it was our decision, made together, with real information. Our daughter is one.
“We loved each other. And we still made the hardest decision of our lives.”
Both of us carried an SMN1 deletion. SMA type 1 is often fatal in the first two years of life — and it's preventable if you know before marriage. We sat with two counselors, a hematologist, and our families. There was no anger between us, just grief and respect. We chose not to proceed together. Two years later I married a man who was tested and is not a carrier of the same variant. I'm pregnant now. My first husband-to-be is also married, to someone compatible with him. What we did was love, not failure.
“The counselor told us both, gently. Then she let us decide.”
Tay-Sachs children usually don't live past four, and the disease has no cure. When both our HEXA reports came back positive as carriers, we spent a month talking, praying, and asking. We chose not to marry each other. There was no drama — just two people who loved each other enough to protect a life we hadn't even started. I'm engaged now to someone who tested and is not a carrier. I still wish my first fiancé well every Eid.
“We're both GJB2 carriers. We married anyway — and we prepared.”
GJB2-related deafness isn't a life-threatening condition — it's a possibility our child might be Deaf. We spoke with two Deaf families and an audiologist before deciding. We learned basic Arabic Sign Language during our engagement year. Our son was born hearing, but we'd have loved him just as much either way. NAWA gave us time to prepare instead of being surprised.
“I'm an X-linked carrier. That mostly matters for our future sons.”
G6PD deficiency runs in my family — my brother has it. NAWA confirmed I'm a carrier on my X chromosome. Because the inheritance is X-linked, our future sons have a 50% chance of being affected, our daughters at most carriers. My husband was cleared. We got married with a simple fridge list — foods and medications to avoid — and our pediatrician now knows to test our first son at birth. That's it. Manageable.
“MSUD scared me — until the report showed only I was a carrier.”
My cousin's baby was diagnosed with MSUD and I couldn't stop thinking about it. NAWA showed I carry one BCKDHA variant, but my fiancé carries none of the MSUD genes. For a recessive condition, you need both partners as carriers for risk. Our children can inherit my carrier status but cannot develop MSUD from us. I slept properly for the first time in months.
“I carry BRCA1. My husband said 'we'll handle it together' — and we do.”
My mother had breast cancer at 42. NAWA's WES picked up a BRCA1 pathogenic variant in me. This is dominant — one copy is enough to raise cancer risk — but risk isn't destiny. I have an oncology plan: yearly MRI, discussions about prophylactic options later. My fiancé heard it all and said one sentence: 'okay, so we plan.' We married eight months ago. Knowing early gave me twenty years of head start.
“She asked me to test. I did it for her. It ended up saving me.”
Honestly, I only tested because she wouldn't marry without it. NAWA found I carry a Lynch syndrome variant in MLH1 — my father died of colon cancer at 54 and nobody had connected the dots. Now I do a colonoscopy every year starting at 25 instead of 45. Our children, if they inherit it, will start young too. She said 'yes' the day we got counseled together. I owe her more than she knows.
“I was terrified for a week. Then the second report came in.”
My first report showed one CFTR variant — I'm a silent carrier of cystic fibrosis. I didn't sleep until my fiancé's report arrived: he carries no CFTR variants. Because CF is recessive, our future children cannot develop CF from us. They might be carriers like me, and one day their own partner should test. That was the whole answer. We got married last spring.
